Dear K_Shash:
Thank you for your encouraging words.
My blood test report is again creeping up, but I am feeling much better. The main difference I notice is improvement since I started following a G6PD-deficiency restricted diet.
My blood test report of March is as follows:
Kappa free light chain level: 8.27 mg/dl
Kappa-lambda free light chain ratio: 4.60
M-spike: 1.47 g/dl.
I will wait for one more month of blood test results (April 22) to decide to decide whether to go for maintenance dose of Revlimid plus dexamethasone.
I am psychologically disturbed sometimes thinking "what if", but feeling better than ever I felt.
Thank you.
Forums
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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: M-spike creeping up, not on maintenance therapy
Hello multiple myeloma feb16,15.
I really do not have any comments about your M-spike readings because I have not had any measurable M-Spike.
I hope you are not overly concerned about these numbers. I re-read the discussion on the "Relapse Criteria" in the thread:
https://myelomabeacon.org/forum/free-light-chain-criteria-for-relapse-t5037.html
I do not think you should have any major concern based on the various 'threshold' levels, I understood from the discussion, therein. From what I read, many would wait at least till the kappa reaches over 200 mg/L or 20.00 mg/dL. Of course, your oncologist and ultimately you have to decide what is best for you, both from a clinical and a quality of life point of view.
In my personal opinion, your blood test results are wonderful, considering that you have been 'drug free' for a year now. In comparison, I have been on the Revlimid-only maintenance (my oncologist doesn't want me to take any dexamethasone) for about a year and a half and my kappa has slowly crept up from about 12 to about 45 +/- mg/L (normal high is about 19.3 mg/dL! My kappa-lambda ratio has stayed relatively stable, rising from just over 1.0 to 1.65. My oncologist has been telling me to stay the course, and that my kappa level increase is not worrisome; when it first jumped from 12-15 to 30+/- , then to 40 +/- and now around 50 mg/L! In comparison, your kappa levels around 80+/- mg/L are quite good since you have been totally drug free for a year.
In closing, like you, I am feeling great and carrying on all my activities. I do seem to get a bit tired easily, but I am managing the 15 mg alternate day Revlimid dose quite well. I am wondering if it is better to do anything different until my kappa and the kappa-lambda ratio levels reach relapse levels (kappa over 200 and kappa-,lambda ratio over a 100 (?)) and repeat a few cycles of full Induction treatment with dex and Velcade. In a way, I think, letting the monoclonal activity should be allowed to reach a moderate level and then hit all those malignant cells with a strong treatment regimen to wipe out a whole lot of them. That is why I discussed a Revlimid or a total treatment holiday, like you are on, with my oncologist already. He did not agree, though.
Again, you have to decide what is best for you after consulting your oncologist. All the best!
I really do not have any comments about your M-spike readings because I have not had any measurable M-Spike.
I hope you are not overly concerned about these numbers. I re-read the discussion on the "Relapse Criteria" in the thread:
https://myelomabeacon.org/forum/free-light-chain-criteria-for-relapse-t5037.html
I do not think you should have any major concern based on the various 'threshold' levels, I understood from the discussion, therein. From what I read, many would wait at least till the kappa reaches over 200 mg/L or 20.00 mg/dL. Of course, your oncologist and ultimately you have to decide what is best for you, both from a clinical and a quality of life point of view.
In my personal opinion, your blood test results are wonderful, considering that you have been 'drug free' for a year now. In comparison, I have been on the Revlimid-only maintenance (my oncologist doesn't want me to take any dexamethasone) for about a year and a half and my kappa has slowly crept up from about 12 to about 45 +/- mg/L (normal high is about 19.3 mg/dL! My kappa-lambda ratio has stayed relatively stable, rising from just over 1.0 to 1.65. My oncologist has been telling me to stay the course, and that my kappa level increase is not worrisome; when it first jumped from 12-15 to 30+/- , then to 40 +/- and now around 50 mg/L! In comparison, your kappa levels around 80+/- mg/L are quite good since you have been totally drug free for a year.
In closing, like you, I am feeling great and carrying on all my activities. I do seem to get a bit tired easily, but I am managing the 15 mg alternate day Revlimid dose quite well. I am wondering if it is better to do anything different until my kappa and the kappa-lambda ratio levels reach relapse levels (kappa over 200 and kappa-,lambda ratio over a 100 (?)) and repeat a few cycles of full Induction treatment with dex and Velcade. In a way, I think, letting the monoclonal activity should be allowed to reach a moderate level and then hit all those malignant cells with a strong treatment regimen to wipe out a whole lot of them. That is why I discussed a Revlimid or a total treatment holiday, like you are on, with my oncologist already. He did not agree, though.
Again, you have to decide what is best for you after consulting your oncologist. 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: M-spike creeping up, not on maintenance therapy
Dear K_Shash:
Thank you. Your opinion and words gave lots of peace and encouragement. I feel better compared to how I have ever felt. Physicians, in general, are more inclined to suggest medicine – that is my general observation. However, my current hematologist is very much in line with my thinking of emphasis on "quality life".
My strict G6PD deficiency diet has been helpful in getting two major things in better shape: my inflamed knee joint, and my autoimmune ear disease.
Thank you K_Shash for your time.
Thank you. Your opinion and words gave lots of peace and encouragement. I feel better compared to how I have ever felt. Physicians, in general, are more inclined to suggest medicine – that is my general observation. However, my current hematologist is very much in line with my thinking of emphasis on "quality life".
My strict G6PD deficiency diet has been helpful in getting two major things in better shape: my inflamed knee joint, and my autoimmune ear disease.
Thank you K_Shash for your time.
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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: M-spike creeping up, not on maintenance therapy
Dear K_Shash:
Thanks for your input and support. I am doing very well, but my light chain and M-spike reading is not going down or stable.
I have reported in this forum my reading up to the month of March 2017. My readings for April and May 2017 are highlighted at the end of the table below:
Date Kappa FLC K/L ratio M-spike
(mg/dl) (g/dL)
Apr 24 4.90 1.70 0.34
After no Revlimid and dexamethasone.
May 28 - - 0.25
Jun 24 3.46 1.8 0.30
Jul 18 3.37 2.1 0.36
Aug 22 3.02 1.7 0.47
Sep 22 4.06 2.4 0.53
Oct 19 3.91 2.7 0.49
Nov 21 4.27 3.6 0.77
Dec 21 6.10 3.2 1.02
2017
Jan 18 7.5 4.0 1.12
Feb 20 6.6 3.5 1.25
Mar 21 8.27 4.6 1.47
Apr 20 10.20 5.96 1.48
May 17 9.29 5.60 1.63
As I said before, I am on Strict G6PD deficiency diet as I am extreme G6PD deficient. I feel better than ever before. I was on a work cum relaxing travel to the Philippines for seven days and since last three days I am in Kyoto, Japan on a pure relaxing trip. I will be here for another one week.
I am worried about my blood test report and always comes to my mind what if. But I am completely off myeloma treatment since last fourteen months plus last four months I stopped my pain medicine and NSAID tablets for knee pain as they should not have been prescribed to me.
Thank you!
Thanks for your input and support. I am doing very well, but my light chain and M-spike reading is not going down or stable.
I have reported in this forum my reading up to the month of March 2017. My readings for April and May 2017 are highlighted at the end of the table below:
Date Kappa FLC K/L ratio M-spike
(mg/dl) (g/dL)
Apr 24 4.90 1.70 0.34
After no Revlimid and dexamethasone.
May 28 - - 0.25
Jun 24 3.46 1.8 0.30
Jul 18 3.37 2.1 0.36
Aug 22 3.02 1.7 0.47
Sep 22 4.06 2.4 0.53
Oct 19 3.91 2.7 0.49
Nov 21 4.27 3.6 0.77
Dec 21 6.10 3.2 1.02
2017
Jan 18 7.5 4.0 1.12
Feb 20 6.6 3.5 1.25
Mar 21 8.27 4.6 1.47
Apr 20 10.20 5.96 1.48
May 17 9.29 5.60 1.63
As I said before, I am on Strict G6PD deficiency diet as I am extreme G6PD deficient. I feel better than ever before. I was on a work cum relaxing travel to the Philippines for seven days and since last three days I am in Kyoto, Japan on a pure relaxing trip. I will be here for another one week.
I am worried about my blood test report and always comes to my mind what if. But I am completely off myeloma treatment since last fourteen months plus last four months I stopped my pain medicine and NSAID tablets for knee pain as they should not have been prescribed to me.
Thank you!
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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: M-spike creeping up, not on maintenance therapy
Hello, MMFeb16,15.
It was good to see your post showing the latest blood test results. I am glad that you are feeling 'normal' and that you have not needed the pain medication for a while.
However, your M-spike is still rising and the kappa and kappa-lambda ratio are trending upward, too. I think if it were to be based strictly on the kappa, the treatment for relapse is usually started when the kappa reaches 20 mg/dL (200 mg/L), and your kappa has not risen to that level. In my own case, my kappa has steadily risen from 12 -15 mg/L to 45 - 50 mg/L over the last 20 months since the end of my induction therapy; particularly after dropping the dex from my regimen. My kappa-lambda ratio has bounced around a bit, but it has reached 1.8, well above the 1.65 'high normal' from the near 1.0 level at the end of my induction treatment. As usual, I feel a little anxious about the upcoming blood test on Monday, June 5. I won't know the results till Wednesday, though.
I am on an alternate day 15 mg Revlimid dose, and I am tolerating that fairly well. My oncologist advised me against stopping the Revlimid completely. I get my skeletal X-rays once a year to confirm that I do not have any obvious problems.
Multibilly had commented about your rising M-spike after your first post on this subject, and I hope you are getting routine X-rays to make sure that you do not have any new or growing lytic lesions on any bones.
I hope you can find an optimum balance between a good quality of life and whatever treatment that is needed to keep this nasty disease under control.
Wish you all the best.
It was good to see your post showing the latest blood test results. I am glad that you are feeling 'normal' and that you have not needed the pain medication for a while.
However, your M-spike is still rising and the kappa and kappa-lambda ratio are trending upward, too. I think if it were to be based strictly on the kappa, the treatment for relapse is usually started when the kappa reaches 20 mg/dL (200 mg/L), and your kappa has not risen to that level. In my own case, my kappa has steadily risen from 12 -15 mg/L to 45 - 50 mg/L over the last 20 months since the end of my induction therapy; particularly after dropping the dex from my regimen. My kappa-lambda ratio has bounced around a bit, but it has reached 1.8, well above the 1.65 'high normal' from the near 1.0 level at the end of my induction treatment. As usual, I feel a little anxious about the upcoming blood test on Monday, June 5. I won't know the results till Wednesday, though.
I am on an alternate day 15 mg Revlimid dose, and I am tolerating that fairly well. My oncologist advised me against stopping the Revlimid completely. I get my skeletal X-rays once a year to confirm that I do not have any obvious problems.
Multibilly had commented about your rising M-spike after your first post on this subject, and I hope you are getting routine X-rays to make sure that you do not have any new or growing lytic lesions on any bones.
I hope you can find an optimum balance between a good quality of life and whatever treatment that is needed to keep this nasty disease under control.
Wish you all the best.
-
K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: M-spike creeping up, not on maintenance therapy
Dear K_Shash:
Thank you for your comment. It did give me hope to worry less.
I am extreme (<10%) G6PD deficient person. I have found some literature which indicates G6PD deficiency - lower immune system - autoimmune diseases. In my case, I have autoimmune rheumatoid arthritis and autoimmune ear Disease. Autoimmune diseases are linked to elevated light chains. I have not found any literature linking autoimmune diseases to M-spike.
I am on strict G6PD deficiency recommended diet. Since then my knee joint inflammation is completely gone. For the first time my RBC and hemoglobin has come in normal range.
None of my three hematologist at three different location, or current ENT specialist, likes to give any significance to G6PD deficiency.
Thank you.
Thank you for your comment. It did give me hope to worry less.
I am extreme (<10%) G6PD deficient person. I have found some literature which indicates G6PD deficiency - lower immune system - autoimmune diseases. In my case, I have autoimmune rheumatoid arthritis and autoimmune ear Disease. Autoimmune diseases are linked to elevated light chains. I have not found any literature linking autoimmune diseases to M-spike.
I am on strict G6PD deficiency recommended diet. Since then my knee joint inflammation is completely gone. For the first time my RBC and hemoglobin has come in normal range.
None of my three hematologist at three different location, or current ENT specialist, likes to give any significance to G6PD deficiency.
Thank you.
-
MMFeb16,15 - Who do you know with myeloma?: Self
- When were you/they diagnosed?: February 16, 2015
- Age at diagnosis: 66
Re: M-spike creeping up, not on maintenance therapy
Dear forum colleagues:
I spent one month traveling overseas and it appears I hurt my knees. My MRI report says:
"bilateral extruded medial menisci with a large radial tear in medial meniscus on the right side. There is also a diffuse interstitial tear or inflammatory changes of the posterior crucial element ligament on the right side and lesser degree on left side."
After returned, I had my monthly blood test, and I've included the key results of the test (in bold) at the end of this table:
Date Kappa FLC K/L ratio M-spike
(mg/dl) (g/dL)
Apr 24 4.90 1.70 0.34
After no Revlimid and dexamethasone.
May 28 - - 0.25
Jun 24 3.46 1.8 0.30
Jul 18 3.37 2.1 0.36
Aug 22 3.02 1.7 0.47
Sep 22 4.06 2.4 0.53
Oct 19 3.91 2.7 0.49
Nov 21 4.27 3.6 0.77
Dec 21 6.10 3.2 1.02
2017
Jan 18 7.5 4.0 1.12
Feb 20 6.6 3.5 1.25
Mar 21 8.27 4.6 1.47
Apr 20 10.20 5.96 1.48
May 17 9.29 5.60 1.63
Jun 20 13.80 7.79 2.19
Could the recent change in my lab results be because of my knee inflammations?
I am feeling perfect except walking difficulty due to knee being inflamed. Knee is improving by therapy and massage. My hemoglobin, RBC, WBC, etc are normal .
I am meeting my hematologist day after tomorrow.
Naturally I am worried with my kappa and M-spike creeping up.
Thank you.
I spent one month traveling overseas and it appears I hurt my knees. My MRI report says:
"bilateral extruded medial menisci with a large radial tear in medial meniscus on the right side. There is also a diffuse interstitial tear or inflammatory changes of the posterior crucial element ligament on the right side and lesser degree on left side."
After returned, I had my monthly blood test, and I've included the key results of the test (in bold) at the end of this table:
Date Kappa FLC K/L ratio M-spike
(mg/dl) (g/dL)
Apr 24 4.90 1.70 0.34
After no Revlimid and dexamethasone.
May 28 - - 0.25
Jun 24 3.46 1.8 0.30
Jul 18 3.37 2.1 0.36
Aug 22 3.02 1.7 0.47
Sep 22 4.06 2.4 0.53
Oct 19 3.91 2.7 0.49
Nov 21 4.27 3.6 0.77
Dec 21 6.10 3.2 1.02
2017
Jan 18 7.5 4.0 1.12
Feb 20 6.6 3.5 1.25
Mar 21 8.27 4.6 1.47
Apr 20 10.20 5.96 1.48
May 17 9.29 5.60 1.63
Jun 20 13.80 7.79 2.19
Could the recent change in my lab results be because of my knee inflammations?
I am feeling perfect except walking difficulty due to knee being inflamed. Knee is improving by therapy and massage. My hemoglobin, RBC, WBC, etc are normal .
I am meeting my hematologist day after tomorrow.
Naturally I am worried with my kappa and M-spike creeping up.
Thank you.
-
MMFeb16,15 - Who do you know with myeloma?: Self
- When were you/they diagnosed?: February 16, 2015
- Age at diagnosis: 66
Re: M-spike creeping up, not on maintenance therapy
Dear multiple myeloma colleagues:
I met my hematologist the day before yesterday. He suggested, and I reluctantly accepted, to go for first level maintenance dose of 15 mg Revlimid for twenty one days on and seven days off. I will have my blood test and meet my hematologist again after the blood test.
My hematologist suggest to restart Zometa every three month. My hematologist also suggested PET/CT scan after next blood test. Last I had was in November, 2016, and it did not show any lytic lesion.
Dear Kate:
How are you? You posted in this thread last year on August 27. My situation of M-spike is similar to what you described yours that time. You were declining treatment at that time. How are you these days?
After two days of 15 mg Revlimid some of my side effects are back. Occasional whole body pain, constant scalp itching, and bloated tummy.
Any comment or suggestion from anyone of you will be helpful.
Thank you.
I met my hematologist the day before yesterday. He suggested, and I reluctantly accepted, to go for first level maintenance dose of 15 mg Revlimid for twenty one days on and seven days off. I will have my blood test and meet my hematologist again after the blood test.
My hematologist suggest to restart Zometa every three month. My hematologist also suggested PET/CT scan after next blood test. Last I had was in November, 2016, and it did not show any lytic lesion.
Dear Kate:
How are you? You posted in this thread last year on August 27. My situation of M-spike is similar to what you described yours that time. You were declining treatment at that time. How are you these days?
After two days of 15 mg Revlimid some of my side effects are back. Occasional whole body pain, constant scalp itching, and bloated tummy.
Any comment or suggestion from anyone of you will be helpful.
Thank you.
-
MMFeb16,15 - Who do you know with myeloma?: Self
- When were you/they diagnosed?: February 16, 2015
- Age at diagnosis: 66
Re: M-spike creeping up, not on maintenance therapy
Hello, MMFeb16,15,
I am sorry that your recent blood tests indicated the need for maintenance. You have been drug (Revlimid) free since April 2016, but your kappa, kappa-lambda ratio, and the M-spike all have risen substantially. Fortunately, your current kappa and K/L levels (I really have not studied the significance of the M-spike levels because mine is the nonsecretory type) are still on the 'border line' per the discussion on relapse after stem cell transplants. As such, nothing more than the resumption of the maintenance therapy seems to be necessary.
I am on an alternate day 15 mg Revlimid maintenance, without any dex! I could not tolerate the 21 days on and 7 Days off regimen once the dex was stopped because I developed the Revlimid rash after 11 days of 15 mg Revlimid. I could tolerate the 10 mg dose for the 21 Days on and 7 Days off but I have settled in and prefer the alternate day 15 mg Revlimid dose.
I find my stamina level, leg cramps and the Revlimid diarrhea are worse on the day after I take my Revlimid at night and I feel almost 'normal' about 24 hours after I take my Revlimid. I am trying to schedule my business travels and my golf rounds around this alternate day schedule. This is a lot better than feeling weak for almost three weeks in a row and slowly recover during the seven days off of Revlimid.
You may want to try this alternate day schedule, after consulting your hematologist, If you have a problem tolerating the Revlimid for the 21 days on. Already, you seem to be experiencing the usual side effects of Revlimid only after two days. A few other myeloma patients seem to be on this alternate day Revlimid regimen, too.
I hope your PET/CT scan is all clear like the last one. I have not had any Zometa at all. Is the need for Zometa indicated by your past scans or tests? My annual x-rays are coming up soon and my oncologist / hematologist has cleared me to play golf and to undertake any strenuous exercise because the numerous lesions on my bones are apparently fairly faint and do not form any 'rings' on the long bones.
Your posts are very helpful to me and to many others, too, I am sure. My oncologist strongly advised me against stopping my Revlimid maintenance, particularly because I am tolerating it with manageable side effects.
All the best and hopefully your kappa, kappa-lambda ratio, and the M-spike come down rapidly to the April 2016 levels and you can enjoy another drug free year or two.
I am sorry that your recent blood tests indicated the need for maintenance. You have been drug (Revlimid) free since April 2016, but your kappa, kappa-lambda ratio, and the M-spike all have risen substantially. Fortunately, your current kappa and K/L levels (I really have not studied the significance of the M-spike levels because mine is the nonsecretory type) are still on the 'border line' per the discussion on relapse after stem cell transplants. As such, nothing more than the resumption of the maintenance therapy seems to be necessary.
I am on an alternate day 15 mg Revlimid maintenance, without any dex! I could not tolerate the 21 days on and 7 Days off regimen once the dex was stopped because I developed the Revlimid rash after 11 days of 15 mg Revlimid. I could tolerate the 10 mg dose for the 21 Days on and 7 Days off but I have settled in and prefer the alternate day 15 mg Revlimid dose.
I find my stamina level, leg cramps and the Revlimid diarrhea are worse on the day after I take my Revlimid at night and I feel almost 'normal' about 24 hours after I take my Revlimid. I am trying to schedule my business travels and my golf rounds around this alternate day schedule. This is a lot better than feeling weak for almost three weeks in a row and slowly recover during the seven days off of Revlimid.
You may want to try this alternate day schedule, after consulting your hematologist, If you have a problem tolerating the Revlimid for the 21 days on. Already, you seem to be experiencing the usual side effects of Revlimid only after two days. A few other myeloma patients seem to be on this alternate day Revlimid regimen, too.
I hope your PET/CT scan is all clear like the last one. I have not had any Zometa at all. Is the need for Zometa indicated by your past scans or tests? My annual x-rays are coming up soon and my oncologist / hematologist has cleared me to play golf and to undertake any strenuous exercise because the numerous lesions on my bones are apparently fairly faint and do not form any 'rings' on the long bones.
Your posts are very helpful to me and to many others, too, I am sure. My oncologist strongly advised me against stopping my Revlimid maintenance, particularly because I am tolerating it with manageable side effects.
All the best and hopefully your kappa, kappa-lambda ratio, and the M-spike come down rapidly to the April 2016 levels and you can enjoy another drug free year or two.
-
K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: M-spike creeping up, not on maintenance therapy
Dear K_Shash and other multiple myeloma colleagues:
Revlimid at 15 mg, after three days, gave so much of scalp itching that I could not sleep for forty eight hours. It was terrible. Other side effects were manageable.
I got the dose reduced to 10 mg and side effects are manageable. It is definitely not like fifteen months off period.
Body pain, which comes and goes, bloating, losing strength in voice, and dull memory remain as they were during full dose (25 mg Revlimid and 20 mg dexamethasone).
Any comments or suggestions would be helpful.
Thank you.
Revlimid at 15 mg, after three days, gave so much of scalp itching that I could not sleep for forty eight hours. It was terrible. Other side effects were manageable.
I got the dose reduced to 10 mg and side effects are manageable. It is definitely not like fifteen months off period.
Body pain, which comes and goes, bloating, losing strength in voice, and dull memory remain as they were during full dose (25 mg Revlimid and 20 mg dexamethasone).
Any comments or suggestions would be helpful.
Thank you.
-
MMFeb16,15 - Who do you know with myeloma?: Self
- When were you/they diagnosed?: February 16, 2015
- Age at diagnosis: 66
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