K_Shash,
Glad to know you are doing much better without the Lipitor. That stuff can be really hard on the muscles. I have not taken it, but my husband has, and it wreaks havoc with his muscles, even at the lower dosages. He has also had to come off it due to liver problems (which resolved off the Lipitor.) But it is tough stuff.
One thing I have learned about studying our bloodwork too closely is that we (myeloma patients) look at it from a somewhat uneducated and subjective perspective. Not to say that you aren't knowledgeable. But we can definitely read things into it that aren't there.
Your K/L ratio is only slightly off. Mine was too, recently, and it normalized. My oncologist wasn't the least bit fazed. From what I understand, kappa and lambda readings can bounce around a bit. What's going on with your M-spike? Do you have any M-protein detected at all in your bloodwork?
Anyway, hang in there! Glad you are feeling better, and able to do some exercise. I am trying to get back into that myself, but having a hard time. It seems it takes me a long time to recover from simple things like a 30 minute walk on a treadmill. I don't get out of breath at all and feel fine during it, but my muscles get tight and a little sore the next day. I am currently on maintenance of Velcade and dex bi-weekly. Had my autologous stem cell transplant in October, 2014.
Have a good weekend!
Forums
Re: Induction therapy to maintenance therapy - a transition
Hello Ellen,
Thanks for sharing your experience.
Apparently all my Kappa free light chains leak out through the kidney and my blood work has had no M protein or M-spike detected.
I only went through the 8 months or so of induction therapy, no transplant, mainly because of my IgG kappa multiple myeloma with standard risk cytogenetics. I responded very well to the induction treatment but had a 2-month setback due to a nasty flu. My kappa and K/L came down to within normal range and stayed there for a few months after the Velcade shots were stopped. My numbers started going up after stopping dex and reducing Revlimid (effectively by only 33%).
Out of curiosity, how close to "normal" are your kappa and K/L readings? Or did they 'normalize' to be within the "normal" range? I am a bit concerned because my readings rose three months in a row, mainly due to the 'tapering down' of my Revlimid and due to stopping the dex. I was told that it may take 3 months before the body adjusts to the stopping of dex that a patient has been taking for many months.
Fortunately, I have had no problem walking a few miles at a time. My muscles in the shoulders and arms were the big problem. The shoulders were sore without doing anything and that constant soreness was wearing me down. Such a difference to be pain / irritation free!
Thanks for the encouragement, too.
K_Shash
Thanks for sharing your experience.
Apparently all my Kappa free light chains leak out through the kidney and my blood work has had no M protein or M-spike detected.
I only went through the 8 months or so of induction therapy, no transplant, mainly because of my IgG kappa multiple myeloma with standard risk cytogenetics. I responded very well to the induction treatment but had a 2-month setback due to a nasty flu. My kappa and K/L came down to within normal range and stayed there for a few months after the Velcade shots were stopped. My numbers started going up after stopping dex and reducing Revlimid (effectively by only 33%).
Out of curiosity, how close to "normal" are your kappa and K/L readings? Or did they 'normalize' to be within the "normal" range? I am a bit concerned because my readings rose three months in a row, mainly due to the 'tapering down' of my Revlimid and due to stopping the dex. I was told that it may take 3 months before the body adjusts to the stopping of dex that a patient has been taking for many months.
Fortunately, I have had no problem walking a few miles at a time. My muscles in the shoulders and arms were the big problem. The shoulders were sore without doing anything and that constant soreness was wearing me down. Such a difference to be pain / irritation free!
Thanks for the encouragement, too.
K_Shash
-
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,
My K/L ratio was briefly at 1.73, primarily because my lambda was below 6. I think my kappa was either 10 or 11 at that time, I was receiving no treatment at the time. I am IgA kappa light chain. At diagnosis, my kappa was 12,000, (yikes!) I sustained some irreversible kidney damage,(my creatinine is 1.1 - 1.2, down from 1.7 at diagnosis). Since I am a small woman, my oncologist thinks my creatinine should be under 1.
I had ASCT in Oct. 2014, and achieved an stringent complete response (sCR). I was close to this before transplant. Started on RVD maintenance in March, 2015. In September, I experienced muscle inflammation, which my onc. said was not treatment-related, but since I was in sCR took me off all meds and said we would watch and wait. I did this for a couple of months, and noticed that my kappa began to rise, not by a lot, but it was about 13 or 15, and the lambda was lower, so they had switched positions while I was off therapy,
Subsequently, I went back to maintenance in October, at my request. My onc felt that it was ok to "watch and wait." I was uncomfortable with that approach. Now I am taking Velcade and dex (12 mg IV) every other week. No Revlimid. Revlimid gave me bad GI problems, even at 5 mg. It also gave me very bad muscle cramps, Although my onc won't admit it, I feel sure that it was responsible for the muscle pain and elevated CPK I had in September. My last reading was kappa 9, lambda 6.
I am hoping that the Velcade / dex maintains my CR for awhile. I also did not like the possibility of a second malignancy with Revlimid. I am sure when I relapse, I will have to have it again, but I hope it will not be too soon!
Evidently, I am in the minority being on Velcade / dex maintenance. I think most people "choose" Revlimid because you don't have to get it at the doctor's office. There are a lot fewer studies on Velcade maintenance, which was frustrating to me when I was trying to make a decision about going back on maintenance. However, from what I could gather, Velcade is better if you have light chain myeloma, and chromosomal abnormalities. I have 1q21 addition, so I thought it was the better choice. I hope I made the right decision!
I hope I answered your question. I wish you continued good health
My K/L ratio was briefly at 1.73, primarily because my lambda was below 6. I think my kappa was either 10 or 11 at that time, I was receiving no treatment at the time. I am IgA kappa light chain. At diagnosis, my kappa was 12,000, (yikes!) I sustained some irreversible kidney damage,(my creatinine is 1.1 - 1.2, down from 1.7 at diagnosis). Since I am a small woman, my oncologist thinks my creatinine should be under 1.
I had ASCT in Oct. 2014, and achieved an stringent complete response (sCR). I was close to this before transplant. Started on RVD maintenance in March, 2015. In September, I experienced muscle inflammation, which my onc. said was not treatment-related, but since I was in sCR took me off all meds and said we would watch and wait. I did this for a couple of months, and noticed that my kappa began to rise, not by a lot, but it was about 13 or 15, and the lambda was lower, so they had switched positions while I was off therapy,
Subsequently, I went back to maintenance in October, at my request. My onc felt that it was ok to "watch and wait." I was uncomfortable with that approach. Now I am taking Velcade and dex (12 mg IV) every other week. No Revlimid. Revlimid gave me bad GI problems, even at 5 mg. It also gave me very bad muscle cramps, Although my onc won't admit it, I feel sure that it was responsible for the muscle pain and elevated CPK I had in September. My last reading was kappa 9, lambda 6.
I am hoping that the Velcade / dex maintains my CR for awhile. I also did not like the possibility of a second malignancy with Revlimid. I am sure when I relapse, I will have to have it again, but I hope it will not be too soon!
Evidently, I am in the minority being on Velcade / dex maintenance. I think most people "choose" Revlimid because you don't have to get it at the doctor's office. There are a lot fewer studies on Velcade maintenance, which was frustrating to me when I was trying to make a decision about going back on maintenance. However, from what I could gather, Velcade is better if you have light chain myeloma, and chromosomal abnormalities. I have 1q21 addition, so I thought it was the better choice. I hope I made the right decision!
I hope I answered your question. I wish you continued good health
Re: Induction therapy to maintenance therapy - a transition
Thank you so much, Ellen.
Yes, you have addressed all my questions, and very thoughtfully. I appreciate the time you must have taken to do that.
Revlimid – I am surprised that there is any doubt at all because the paperwork I get with my Revlimid prescription clearly states that muscle pain is a 'normal' side effect, as I recall. As you pointed out in an earlier post, the statins like Lipitor cause similar side effects and the two together were just too much for me, at least. Surprisingly, I had tolerated Lipitor by itself for 20+ years and I did not experience the shoulder and arm muscle pains for almost 10 X 4-week cycles of RVD. It is possible that the dex was helping me, but making me tired all the time after about 8 cycles.
Maintenance – I was lucky and my multiple myeloma was discovered due to the high urine protein in my routine physical, I started with a kappa of only 1,070. It may have been that my RVD treatment during the induction phase was mild but my oncologist and I were satisfied with reaching a kappa of around 12.5 and K/L of around 1.1. I think I reached the limit of my tolerance level and wanted to stop dex at that point. It may seem that, with my oncologist's advice to stay the course, I have been complacent in letting my kappa reach a reading of over 30 and my K/L ratio at 1.85. These levels are checked every 4 weeks and it is hard to conclude what is best without more data points. I have read in the Beacon dialogs and articles that even a 8 mg dex helps enhance the effectiveness of the Revlimid, but there is also the survey that most oncologists recommend Revlimid-only maintenance. My oncologist is in the 'Revlimid-only' camp. I am tolerating the Revlimid well, so far. My dose was decreased by about a 30% after I started getting the Revlimid rash as soon as the dex was stopped. In the past I must have been on the border line of this tolerance level, too, because I had a mild rash on two occasions, both towards the end of the 21-day ON cycle of Revlimid. A small dose of Benadryl was all it took to cure that.
Tolerance Levels – You have endured the ASCT, some (hopefully very slight) kidney damage and aggressively treating the slightest increase in your kappa or K/L ratio. Remarkably, you achieved single digit levels of kappa and lambda. I weighed my options and decided against the ASCT and I was anxious to get off the induction dosage of dex and Revlimid (stopping the Velcade did not result in any increase in my kappa or K/L). In general, I may be taking a riskier approach. I will be 69 soon and want to have a 'normal life' now rather than go through more chemo (or ASCT) and its side effects for a few more years. Of course, I will have to increase my maintenance dose or add dex, with my oncologist's consent, IF my kappa keeps rising. Luckily I do not have any chromosomal abnormalities.
Secondary malignancies caused by Revlimid – This is a major concern that I had not addressed and I will check with my oncologist IF I should be on Velcade maintenance, too. I believe I would need some dex to counter the short-term drowsiness caused by Velcade. The 50 mile weekly round trip to the oncology center for the Velcade shot would be a small inconvenience to avoid the horror of another malignancy.
Thanks again for taking the time to reply in detail and I hope you remain in sCR for a very very long time.
Yes, you have addressed all my questions, and very thoughtfully. I appreciate the time you must have taken to do that.
Revlimid – I am surprised that there is any doubt at all because the paperwork I get with my Revlimid prescription clearly states that muscle pain is a 'normal' side effect, as I recall. As you pointed out in an earlier post, the statins like Lipitor cause similar side effects and the two together were just too much for me, at least. Surprisingly, I had tolerated Lipitor by itself for 20+ years and I did not experience the shoulder and arm muscle pains for almost 10 X 4-week cycles of RVD. It is possible that the dex was helping me, but making me tired all the time after about 8 cycles.
Maintenance – I was lucky and my multiple myeloma was discovered due to the high urine protein in my routine physical, I started with a kappa of only 1,070. It may have been that my RVD treatment during the induction phase was mild but my oncologist and I were satisfied with reaching a kappa of around 12.5 and K/L of around 1.1. I think I reached the limit of my tolerance level and wanted to stop dex at that point. It may seem that, with my oncologist's advice to stay the course, I have been complacent in letting my kappa reach a reading of over 30 and my K/L ratio at 1.85. These levels are checked every 4 weeks and it is hard to conclude what is best without more data points. I have read in the Beacon dialogs and articles that even a 8 mg dex helps enhance the effectiveness of the Revlimid, but there is also the survey that most oncologists recommend Revlimid-only maintenance. My oncologist is in the 'Revlimid-only' camp. I am tolerating the Revlimid well, so far. My dose was decreased by about a 30% after I started getting the Revlimid rash as soon as the dex was stopped. In the past I must have been on the border line of this tolerance level, too, because I had a mild rash on two occasions, both towards the end of the 21-day ON cycle of Revlimid. A small dose of Benadryl was all it took to cure that.
Tolerance Levels – You have endured the ASCT, some (hopefully very slight) kidney damage and aggressively treating the slightest increase in your kappa or K/L ratio. Remarkably, you achieved single digit levels of kappa and lambda. I weighed my options and decided against the ASCT and I was anxious to get off the induction dosage of dex and Revlimid (stopping the Velcade did not result in any increase in my kappa or K/L). In general, I may be taking a riskier approach. I will be 69 soon and want to have a 'normal life' now rather than go through more chemo (or ASCT) and its side effects for a few more years. Of course, I will have to increase my maintenance dose or add dex, with my oncologist's consent, IF my kappa keeps rising. Luckily I do not have any chromosomal abnormalities.
Secondary malignancies caused by Revlimid – This is a major concern that I had not addressed and I will check with my oncologist IF I should be on Velcade maintenance, too. I believe I would need some dex to counter the short-term drowsiness caused by Velcade. The 50 mile weekly round trip to the oncology center for the Velcade shot would be a small inconvenience to avoid the horror of another malignancy.
Thanks again for taking the time to reply in detail and I hope you remain in sCR for a very very long time.
-
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 and Ellen,
I've been reading your recent posts with interest.
K_Shash, I'm glad to hear that you are feeling better after stopping the Lipitor. I have a friend who has had problems with muscle pain from Lipitor. But my wife was on it for about a year and had no problems. Another example of how drugs affect different people differently.
And I understand your concern about your most recent kappa level rising a bit. But I think your doctor is right to not get overly concerned about it. The main thing to consider is the trend over several months.
And speaking of trends, and to provide another patient data point – in addition to Ellen's – about kappa, lambda, and k/l ratio during maintenance, here's an update on my numbers. All three of my serum FLC readings are in the normal range now (as of last Wednesday's lab work) for the first time since April. During most of the past 9 months kappa has been normal and lambda low normal or slightly below normal.
But I noticed that during the time that I was off Revlimid in August and September that the lambda reading went quite low (as low as 0.10), which drove the ratio up into the 3.00-6.50 range through October. I asked my oncologist if that increase was caused by myeloma progressing when I was off Revlimid, despite the fact that an August bone marrow biopsy showed me to still be MRD negative. He said he really didn't know. That's certainly one possibility – myeloma suppressing the lambda during that time period. But he also said since Revlimid interacts with the immune system, there might have been things going on with my immune system independent of the myeloma when I was off Revlimid.
My concern, obviously, is wondering if the myeloma will progress immediately if/when I have to stop Revlimid again, perhaps (semi-)permanently. He said there's just no way of knowing with the data we have right now. All we can assume is that there is some myeloma still in my system, even with the MRD negative status.
I hope that information is a help to you. Hang in there!
And, Ellen, thanks for your input and information too. I hope the Velcade maintenance works well for you!
Mike
I've been reading your recent posts with interest.
K_Shash, I'm glad to hear that you are feeling better after stopping the Lipitor. I have a friend who has had problems with muscle pain from Lipitor. But my wife was on it for about a year and had no problems. Another example of how drugs affect different people differently.
And I understand your concern about your most recent kappa level rising a bit. But I think your doctor is right to not get overly concerned about it. The main thing to consider is the trend over several months.
And speaking of trends, and to provide another patient data point – in addition to Ellen's – about kappa, lambda, and k/l ratio during maintenance, here's an update on my numbers. All three of my serum FLC readings are in the normal range now (as of last Wednesday's lab work) for the first time since April. During most of the past 9 months kappa has been normal and lambda low normal or slightly below normal.
But I noticed that during the time that I was off Revlimid in August and September that the lambda reading went quite low (as low as 0.10), which drove the ratio up into the 3.00-6.50 range through October. I asked my oncologist if that increase was caused by myeloma progressing when I was off Revlimid, despite the fact that an August bone marrow biopsy showed me to still be MRD negative. He said he really didn't know. That's certainly one possibility – myeloma suppressing the lambda during that time period. But he also said since Revlimid interacts with the immune system, there might have been things going on with my immune system independent of the myeloma when I was off Revlimid.
My concern, obviously, is wondering if the myeloma will progress immediately if/when I have to stop Revlimid again, perhaps (semi-)permanently. He said there's just no way of knowing with the data we have right now. All we can assume is that there is some myeloma still in my system, even with the MRD negative status.
I hope that information is a help to you. Hang in there!
And, Ellen, thanks for your input and information too. I hope the Velcade maintenance works well for you!
Mike
-
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
Hi Mike,
I was on Lipitor for over 20 years and tolerated my induction treatment for months without any major pains. I had started with Mevacor (lovastatin) and that gave me these pains within a week or two. As you pointed out, everyone seems to react differently to these cholestrol drugs. My wife can tolerate Mevacor but not the Lipitor.
I certainly hope that you can tolerate Revlimid indefinitely. Fortunately, I think there are two newer drugs that you may be able to tolerate, just in case. However, I remember reading about some nasty side effects of Pomalyst that Tracy J wrote about. I think she tolerated that well for about 6 months. It is unfortunate that the ASCT is not a long-term cure and some traces of the multiple myeloma are still present, as evidenced by the inevitable relapse after about 3 years. Goes to prove that the multiple myeloma is treatable but not curable. However, there are so many patients living for over 10 years on maintenance, with or without ASCT. I am sure most of us will manage that. Certainly not a problem for someone who can climb up the Half Dome!!
My relatively smaller achievement was being able to play a round of golf yesterday. I could almost feel being on the verge of pulling my right arm muscle or tendon, particularly during any swing. I managed the round without any sprain and this morning I feel great. Stopping the Lipitor has made this possible but, on balance, the Revlimid is causing this shoulder and muscle problem to a greater magnitude than the Lipitor did. Of course, combined with Lipitor, it was intolerable for me. Again, everyone reacts differently to the statins and to Revlimid, too; most probably.
It is very surprising that your kappa was stable but lambda dropped so much when you were off Revlimid. I wonder why the overall immune system reacted in such a way and the kappa and the lambda FLC's went out of balance.
One of my wife's colleagues just came back from a hematology / oncology conference and he was encouraged by two new novel drugs introduced recently. I believe we have read about that news here on the Beacon already. However, it should be some comfort that Revlimid intolerance is not going to be a big problem, subject to our insurance companies adapting quickly.
All the best to you and I, too, am going to explore the alternative Velcade maintenance (every other week would be a lot easier) that Ellen is managing well with. Is that an option for you?
I was on Lipitor for over 20 years and tolerated my induction treatment for months without any major pains. I had started with Mevacor (lovastatin) and that gave me these pains within a week or two. As you pointed out, everyone seems to react differently to these cholestrol drugs. My wife can tolerate Mevacor but not the Lipitor.
I certainly hope that you can tolerate Revlimid indefinitely. Fortunately, I think there are two newer drugs that you may be able to tolerate, just in case. However, I remember reading about some nasty side effects of Pomalyst that Tracy J wrote about. I think she tolerated that well for about 6 months. It is unfortunate that the ASCT is not a long-term cure and some traces of the multiple myeloma are still present, as evidenced by the inevitable relapse after about 3 years. Goes to prove that the multiple myeloma is treatable but not curable. However, there are so many patients living for over 10 years on maintenance, with or without ASCT. I am sure most of us will manage that. Certainly not a problem for someone who can climb up the Half Dome!!
My relatively smaller achievement was being able to play a round of golf yesterday. I could almost feel being on the verge of pulling my right arm muscle or tendon, particularly during any swing. I managed the round without any sprain and this morning I feel great. Stopping the Lipitor has made this possible but, on balance, the Revlimid is causing this shoulder and muscle problem to a greater magnitude than the Lipitor did. Of course, combined with Lipitor, it was intolerable for me. Again, everyone reacts differently to the statins and to Revlimid, too; most probably.
It is very surprising that your kappa was stable but lambda dropped so much when you were off Revlimid. I wonder why the overall immune system reacted in such a way and the kappa and the lambda FLC's went out of balance.
One of my wife's colleagues just came back from a hematology / oncology conference and he was encouraged by two new novel drugs introduced recently. I believe we have read about that news here on the Beacon already. However, it should be some comfort that Revlimid intolerance is not going to be a big problem, subject to our insurance companies adapting quickly.
All the best to you and I, too, am going to explore the alternative Velcade maintenance (every other week would be a lot easier) that Ellen is managing well with. Is that an option for you?
-
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,
Congratulations on that round of golf! And I'm especially glad to hear that you felt good the next day. It would be pretty hard to play a round of golf here in NJ right now, with the remains of the big weekend blizzard still on the ground here.
In answer to your question about whether Velcade maintenance would be an option for me – not in the foreseeable future. That's one of the questions I asked my oncologist back in the summer when he temporarily stopped my Revlimid due to the heart issues I was having. He was pretty adamant that he wanted to get me back on Revlimid, and if we couldn't do that, then stop maintenance.
We talked about a number of other maintenance possibilities; he didn't want to go with any of them. I think the main factor for him was that I've been doing so well, in terms of the myeloma response, on Revlimid that he wanted to stick with that. I would think Pomalyst, another IMID, might be an option to try down the road, but he didn't want to go there yet. I've not heard much about Pomalyst being used for maintenance.
Fortunately, I seem to be tolerating the lower dose of Revlimid ok.
Keep on doing well!
Mike
Congratulations on that round of golf! And I'm especially glad to hear that you felt good the next day. It would be pretty hard to play a round of golf here in NJ right now, with the remains of the big weekend blizzard still on the ground here.
In answer to your question about whether Velcade maintenance would be an option for me – not in the foreseeable future. That's one of the questions I asked my oncologist back in the summer when he temporarily stopped my Revlimid due to the heart issues I was having. He was pretty adamant that he wanted to get me back on Revlimid, and if we couldn't do that, then stop maintenance.
We talked about a number of other maintenance possibilities; he didn't want to go with any of them. I think the main factor for him was that I've been doing so well, in terms of the myeloma response, on Revlimid that he wanted to stick with that. I would think Pomalyst, another IMID, might be an option to try down the road, but he didn't want to go there yet. I've not heard much about Pomalyst being used for maintenance.
Fortunately, I seem to be tolerating the lower dose of Revlimid ok.
Keep on doing well!
Mike
-
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
Mikeb,
Did your doctor give an explanation as to why he does not want you on Velcade?
I ask because I am on Velcade maintenance (without dexamethasone). I remember that you have low-risk myeloma, which is not my case, and so am wondering whether your doctor thinks that Velcade is not especially effective in your situation. Or, does Velcade present other issues that he wants you to avoid?
Was very glad to read that your sFLC numbers were all normal this past month. My kappa / lambda ratio has decreased, but it is still just a little high. If the pattern of the last two months continues, I should be fine next month (hoping).
Did your doctor give an explanation as to why he does not want you on Velcade?
I ask because I am on Velcade maintenance (without dexamethasone). I remember that you have low-risk myeloma, which is not my case, and so am wondering whether your doctor thinks that Velcade is not especially effective in your situation. Or, does Velcade present other issues that he wants you to avoid?
Was very glad to read that your sFLC numbers were all normal this past month. My kappa / lambda ratio has decreased, but it is still just a little high. If the pattern of the last two months continues, I should be fine next month (hoping).
Re: Induction therapy to maintenance therapy - a transition
Hi mrozdav,
In answer to your question, the main reason Velcade would not be good for me as a maintenance drug is because I had some peripheral neuropathy from using it (in RVD) during induction and consolidation therapy. My doctor and I are both wary of doing more treatment with it for fear of making the peripheral neuropathy worse.
Thanks for the kind words about my sFLC numbers. I'm happy about where they are too!
I hope your recent trend continues so that your kappa / lambda ratio is normal next month. Please keep us posted.
Mike
In answer to your question, the main reason Velcade would not be good for me as a maintenance drug is because I had some peripheral neuropathy from using it (in RVD) during induction and consolidation therapy. My doctor and I are both wary of doing more treatment with it for fear of making the peripheral neuropathy worse.
Thanks for the kind words about my sFLC numbers. I'm happy about where they are too!
I hope your recent trend continues so that your kappa / lambda ratio is normal next month. Please keep us posted.
Mike
-
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
February 18, 2016
I got my blood test results this morning and my kappa free light chain level has dropped to the level seen 8 weeks ago, i.e. 27.8. The kappa / lambda ratio remained essentially unchanged at 1.89 (1.87 for the last 2 readings, 4 weeks and 8 weeks ago).
After stopping my Velcade shots, I had my kappa stable around 12.5 and kappa / lambda about 1.1 for about 8 weeks when the dex was stopped and the Revlimid reduced by about a third approximately 16 weeks ago.
My kappa readings have been 19.7, 27.7, 31.6 and now 27.8, over the last 4 4-week intervals. Kappa / lambda in the 1.56 - 1.89 range. When I asked specifically, my oncologist replied that 'yes, one can live with these levels' of kappa. The last time he had advised me that there was no need to change anything. In another discussion with my oncologist, I had understood that the long-term harmful effects of dex are not worth the benefits of reducing the kappa level.
I am quite happy that this lower level chemo (maintenance level of Revlimid without dex or Velcade) is so much more tolerable. The induction chemo became almost intolerable as time went by and by the end of the 8th 4-week cycle I felt tired and exhausted all the time. I still have some muscle pain (more like soreness now) if I lift any heavy objects, but I am able to play a weekly round of golf and carry out all my business and routine activities. There are some oncologists who would recommend raising my Revlimid dose and adding dex to get my kappa down to a single digit level, but to me, it's not worth the loss in quality of life.
The chemo pharmacy pointed out that I do not need the acyclovir as the shingles scare is related to the Velcade shots. My oncologist confirmed that only this morning. I hope stopping acyclovir helps with my GI problems. I read the paperwork with the acyclovir prescription refill and the GI problems is the primary side effect mentioned there. I hope that stopping the acyclovir helps a lot.
I would appreciate any and all the comments about the kappa levels of around 30 (with kappa / lambda ratio around 2.0) and also any feedback on acyclovir.
K_Shash
I got my blood test results this morning and my kappa free light chain level has dropped to the level seen 8 weeks ago, i.e. 27.8. The kappa / lambda ratio remained essentially unchanged at 1.89 (1.87 for the last 2 readings, 4 weeks and 8 weeks ago).
After stopping my Velcade shots, I had my kappa stable around 12.5 and kappa / lambda about 1.1 for about 8 weeks when the dex was stopped and the Revlimid reduced by about a third approximately 16 weeks ago.
My kappa readings have been 19.7, 27.7, 31.6 and now 27.8, over the last 4 4-week intervals. Kappa / lambda in the 1.56 - 1.89 range. When I asked specifically, my oncologist replied that 'yes, one can live with these levels' of kappa. The last time he had advised me that there was no need to change anything. In another discussion with my oncologist, I had understood that the long-term harmful effects of dex are not worth the benefits of reducing the kappa level.
I am quite happy that this lower level chemo (maintenance level of Revlimid without dex or Velcade) is so much more tolerable. The induction chemo became almost intolerable as time went by and by the end of the 8th 4-week cycle I felt tired and exhausted all the time. I still have some muscle pain (more like soreness now) if I lift any heavy objects, but I am able to play a weekly round of golf and carry out all my business and routine activities. There are some oncologists who would recommend raising my Revlimid dose and adding dex to get my kappa down to a single digit level, but to me, it's not worth the loss in quality of life.
The chemo pharmacy pointed out that I do not need the acyclovir as the shingles scare is related to the Velcade shots. My oncologist confirmed that only this morning. I hope stopping acyclovir helps with my GI problems. I read the paperwork with the acyclovir prescription refill and the GI problems is the primary side effect mentioned there. I hope that stopping the acyclovir helps a lot.
I would appreciate any and all the comments about the kappa levels of around 30 (with kappa / lambda ratio around 2.0) and also any feedback on acyclovir.
K_Shash
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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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