Hello MMFeb16,15.
It seems that all your myeloma parameters (kappa, kappa-lambda ratio, and the M-spike) are stable and your hemoglobin, RBC's and other blood tests are showing improvement. Hopefully the kappa and M-spike will start showing improvements with the Revlimid maintenance.
Do you see a need for the PET/CT scan? I have not had any and I have had only the annual skeletal x-rays. So far they have been stable and though I had some lesions on most bones, head to toe, none were considered serious and no 'rings' were observed on the arm or leg and thigh bones. Hence, I was cleared to play golf and not worry about taking full swings. I should be getting my x-rays in a month or two. I hope my oncologist would say 'nothing there / new.' again.
In my case, my kappa and kappa-lambda ratio were stable and actually declined from near 50 mg/L to about 46 in early August. However, my kappa jumped to 55+ and kappa-lambda ratio to 2.2 from 1.7 in my latest late August blood test. I started taking cholestyramine for the Revlimid diarrhea about 6 weeks ago and it may be causing a problem by interfering with the absorption and effectiveness of the Revlimid. The pharmacy had advised me that a 4 to 6 hour window, before and after the Revlimid would be OK. My oncologist just advised me to extend the interval to 12 hours. The cholestyramine is working well, too well, for me. I have already reduced my dose to 1/2 the recommended amount and down to once a day. I plan to make it only once every other day and skip it on my alternate days of Revlimid. I plan to report this experience with cholestyramine in a different thread soon.
I think I have already mentioned how well the alternate day Revlimid is working for me. The daily dose of it for 21 days seemed to be far worse for the cumulative side effects. This sudden jump in my kappa and kappa-lambda ratio have got me quite concerned. My kappa and kappa-lambda ratio were in the normal range after the completion of the induction and stopping the Velcade shots. However, both those numbers rose almost immediately after stopping the dex; kappa to 30+/- mg/l and kappa-lambda ratio from around 1.1 to about 1.8. After about 6 months of that my kappa again rose, as if in a quantum step, to around 40, and hovered there for about 8 months. The kappa and kappa-lambda ratio have been pretty stable around 45-50 for the last 8 months or so, and I hope this sudden increase is not an indicator of a trend and that it's all because of this cholestyramine.
There are some similarities in our individual experience with the IgG kappa multiple myeloma and without an autologous stem cell transplant. I do not have any deficiency like your G6PD deficiency, however. I read your post with a lot of interest as I think we are on parallel paths and I write all about my blood tests in my reply to your posts. In your case, I hope that a 'tolerable maintenance dose' of Revlimid can bring all your IgG kappa parameters to the April 2016 level or better and you can take another year's 'holiday' from the maintenance treatment. Best of luck!
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: M-spike creeping up, not on maintenance therapy
Dear K_Shash:
Thank you. Your comments are always encouraging and supportive.
I am on my 13th day of the 5 mg Revlimid maintenance dose, and this time so far I don't have any unmanageable side effects. I hope my free light chain levels and M-spike remain stable or go down. After ten days, I will have my monthly blood test. Let us see.
I have gotten mixed advice about PET/CT scans, and I am not in favor of doing one again within a year.
Any comment or suggestions from my multiple myeloma colleagues will be appreciated.
Thank you.
Thank you. Your comments are always encouraging and supportive.
I am on my 13th day of the 5 mg Revlimid maintenance dose, and this time so far I don't have any unmanageable side effects. I hope my free light chain levels and M-spike remain stable or go down. After ten days, I will have my monthly blood test. Let us see.
I have gotten mixed advice about PET/CT scans, and I am not in favor of doing one again within a year.
Any comment or suggestions from my multiple myeloma colleagues will be appreciated.
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
Dear K_Shash and all forum friends:
I have added my last month's blood test report (dated September 22, 2017). All other tests in the table below are also from 2017.:
Date Kappa FLC K/L ratio M-spike
(mg/dl) (g/dL)
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
Jul 27 12.00 5.58 1.82
Aug 28 12.80 6.63 1.88
Sep 22 15.8 5.93 1.56
It appears to me the parameters are downward or getting stable. Please let me know your comments and suggestions.
Thank you for your help.
I have added my last month's blood test report (dated September 22, 2017). All other tests in the table below are also from 2017.:
Date Kappa FLC K/L ratio M-spike
(mg/dl) (g/dL)
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
Jul 27 12.00 5.58 1.82
Aug 28 12.80 6.63 1.88
Sep 22 15.8 5.93 1.56
It appears to me the parameters are downward or getting stable. Please let me know your comments and suggestions.
Thank you for your help.
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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.
Yes, I think your overall blood work shows a noticeable improvement in the M-spike and also in the kappa-lambda ratio. I am not sure why the kappa seems so high. That kappa level combined with a welcome drop in the kappa-lambda ratio MAY indicate that your kappa and lambda free light chain levels have risen in tandem to fight an infection. I wonder what your oncologist says.
And is your oncologist against using even a small dose of dexamethasone (for example, 8 mg, once a week)? My oncologist is in the Revlimid-only maintenance camp. However, some oncologists recommend a small supplement of dex. I am quite curious.
Wish you continued improvement in your blood tests and also I hope you continue to manage the Revlimid side effects. Even the small 5 mg dose seems to be helping.
Yes, I think your overall blood work shows a noticeable improvement in the M-spike and also in the kappa-lambda ratio. I am not sure why the kappa seems so high. That kappa level combined with a welcome drop in the kappa-lambda ratio MAY indicate that your kappa and lambda free light chain levels have risen in tandem to fight an infection. I wonder what your oncologist says.
And is your oncologist against using even a small dose of dexamethasone (for example, 8 mg, once a week)? My oncologist is in the Revlimid-only maintenance camp. However, some oncologists recommend a small supplement of dex. I am quite curious.
Wish you continued improvement in your blood tests and also I hope you continue to manage the Revlimid side effects. Even the small 5 mg dose seems to be helping.
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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
Hello MMFeb16,15
To make it a bit easier to read the results, I put the kappa-lambda ratio and M-spike data into charts. I also added from reading your thread the dates of the end of maintenance and the new start of maintenance.
To make it a bit easier to read the results, I put the kappa-lambda ratio and M-spike data into charts. I also added from reading your thread the dates of the end of maintenance and the new start of maintenance.
- M-spike
- chart3v2.png (15.79 KiB) Viewed 1465 times
- Kappa-lambda ratio
- chart4v2.png (15.46 KiB) Viewed 1465 times
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Pauillac - Name: Louise Rose
- Who do you know with myeloma?: my wife
- When were you/they diagnosed?: March 2017
- Age at diagnosis: 42
Re: M-spike creeping up, not on maintenance therapy
Dear K-Sash and Pauillac:
Thank you for your comments and suggestions. i felt like waiting for one more blood test before discussing the results further.
.
Please see my October blood test reports along with rest of the monthly reports since this January:
Date Kappa FLC K/L ratio M-spike
(mg/dl) (g/dL)
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
Jul 27 12.00 5.58 1.82
Aug 28 12.80 6.63 1.88
Sep 22 15.8 5.93 1.56
Oct 23 11.3 6.10 1.85
I welcome comments and/or suggestions. I am concerned as anyone could be, but I am not restricting any of my activities except controlled diet from my being a G6PD deficient person perspective. This diet is also conducive for any cancer patient from alternative medicine and or general good health perspective.
Thank you.
Thank you for your comments and suggestions. i felt like waiting for one more blood test before discussing the results further.
.
Please see my October blood test reports along with rest of the monthly reports since this January:
Date Kappa FLC K/L ratio M-spike
(mg/dl) (g/dL)
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
Jul 27 12.00 5.58 1.82
Aug 28 12.80 6.63 1.88
Sep 22 15.8 5.93 1.56
Oct 23 11.3 6.10 1.85
I welcome comments and/or suggestions. I am concerned as anyone could be, but I am not restricting any of my activities except controlled diet from my being a G6PD deficient person perspective. This diet is also conducive for any cancer patient from alternative medicine and or general good health perspective.
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.
Great!
Your test results seem to be quite stable over the last 4 Revlimid cycles, if we disregard your September readings when the kappa showed a sudden jump but the kappa-lambda ratio and the M-spike showed significant drops. I think your oncologist, like mine, would say "stay the course".
Is there any concern about managing your activities at these kappa and M-spike levels? I am asking because though my kappa has been stable around 4.5 mg/dL (45 mg/L) for almost a year and the kappa-lambda ratio has been around the normal range, I think the myeloma or the Revlimid may have caused a recent 'tear' I experienced just three weeks ago while playing golf. My skeletal x-rays have confirmed that all is 'stable' and I have no broken bone in my arm. However, there is a big knot on my bicep. It is likely the bunching up of the torn muscle or tendon. I had some earlier pangs of pain and a feeling that something had 'twisted' in that arm. I hope my PCP can diagnose the muscle injury to my arm soon.
I am approaching my 3rd anniversary (Nov. 26) of the diagnosis of my myeloma. I am doing quite well and hoping to get back to the weekly golf soon, torn biceps or not. I really should not be using that muscle during my golf swings. However, I have to avoid the cramps after a long drive and manage my Revlimid diarrhea but I am leading a near-normal and active life.
Your 3rd anniversary (Feb 16, 2018?) isn't too far behind. I hope both of us AND all the others with us on this 'journey' manage this nasty problem and will celebrate such anniversaries for decades to came.
Great!
Your test results seem to be quite stable over the last 4 Revlimid cycles, if we disregard your September readings when the kappa showed a sudden jump but the kappa-lambda ratio and the M-spike showed significant drops. I think your oncologist, like mine, would say "stay the course".
Is there any concern about managing your activities at these kappa and M-spike levels? I am asking because though my kappa has been stable around 4.5 mg/dL (45 mg/L) for almost a year and the kappa-lambda ratio has been around the normal range, I think the myeloma or the Revlimid may have caused a recent 'tear' I experienced just three weeks ago while playing golf. My skeletal x-rays have confirmed that all is 'stable' and I have no broken bone in my arm. However, there is a big knot on my bicep. It is likely the bunching up of the torn muscle or tendon. I had some earlier pangs of pain and a feeling that something had 'twisted' in that arm. I hope my PCP can diagnose the muscle injury to my arm soon.
I am approaching my 3rd anniversary (Nov. 26) of the diagnosis of my myeloma. I am doing quite well and hoping to get back to the weekly golf soon, torn biceps or not. I really should not be using that muscle during my golf swings. However, I have to avoid the cramps after a long drive and manage my Revlimid diarrhea but I am leading a near-normal and active life.
Your 3rd anniversary (Feb 16, 2018?) isn't too far behind. I hope both of us AND all the others with us on this 'journey' manage this nasty problem and will celebrate such anniversaries for decades to came.
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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 multiple myeloma colleagues:
I have been busy with my work and off from my maintenance dose since October. My parameters appears stable considering I am not on maintenance dose. I feel great but very watchful. My hemoglobin, RBC and WBC are in normal range.
All results below are for 2017.
Date Kappa FLC K/L ratio M-spike
(mg/dl) (g/dL)
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
Jul 27 12.00 5.58 1.82
Aug 28 12.80 6.63 1.88
Sep 22 15.8 5.93 1.56
Oct 23 11.3 6.10 1.85
Nov 22 16.5 8.0 2.10
Dec 16 15.9 7.6 2.10
Any comments and/or suggestions are very much appreciated. Worry of what and when does cloud my existence sometimes, but in general I feel very good.
Thank you.
I have been busy with my work and off from my maintenance dose since October. My parameters appears stable considering I am not on maintenance dose. I feel great but very watchful. My hemoglobin, RBC and WBC are in normal range.
All results below are for 2017.
Date Kappa FLC K/L ratio M-spike
(mg/dl) (g/dL)
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
Jul 27 12.00 5.58 1.82
Aug 28 12.80 6.63 1.88
Sep 22 15.8 5.93 1.56
Oct 23 11.3 6.10 1.85
Nov 22 16.5 8.0 2.10
Dec 16 15.9 7.6 2.10
Any comments and/or suggestions are very much appreciated. Worry of what and when does cloud my existence sometimes, but in general I feel very good.
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
Happy New Year, MMFeb16,15 and to all the Beacon Staff and contributors.
Glad that you have been busy with your work and enjoying a good quality of life.
Your blood test results indicate a little spike in your November kappa, kappa-lambda ratio, and in the M-spike as soon as the Revlimid maintenance was stopped in October. These numbers also came down slightly in December. It may be too early to tell with just two sets of test results but there is no alarming or sustained increase in these numbers in your case. What is your oncologist's advice? Do these levels of M-spike and high kappa and kappa-lambda ratio pose any other dangers, like new lesions on the bones or easy bone fractures?
I am concerned about these questions because my latest tests showed a sudden 30% increase in my kappa from around 48 mg/L to 64+ mg/L (this lab reports the kappa in mg/L) and the kappa-lambda ratio rose about 20% from 1.58 to 1.91. This is in spite of being on maintenance of the alternate day 15 mg Revlimid!
I switched to Imodium from the cholestyramine to control my Revlimid diarrhea and its timing may have interfered with the Revlimid effectiveness. My oncologist advised me that it is just one reading and to 'stay the course' and not be overly concerned. But I wonder what would be the dangers of having the higher kappa. There is plenty to be concerned about the side effects of Revlimid, particularly after 3 years, in my case.
I, too, have been able to lead a fairly active life; keeping busy with my business activities and with pretty tiring outings with the family and grand kids. I really can't complain about my quality of life, either.
Let's hope both of us continue to manage our multiple myelomas for years, decades to come.
Glad that you have been busy with your work and enjoying a good quality of life.
Your blood test results indicate a little spike in your November kappa, kappa-lambda ratio, and in the M-spike as soon as the Revlimid maintenance was stopped in October. These numbers also came down slightly in December. It may be too early to tell with just two sets of test results but there is no alarming or sustained increase in these numbers in your case. What is your oncologist's advice? Do these levels of M-spike and high kappa and kappa-lambda ratio pose any other dangers, like new lesions on the bones or easy bone fractures?
I am concerned about these questions because my latest tests showed a sudden 30% increase in my kappa from around 48 mg/L to 64+ mg/L (this lab reports the kappa in mg/L) and the kappa-lambda ratio rose about 20% from 1.58 to 1.91. This is in spite of being on maintenance of the alternate day 15 mg Revlimid!
I switched to Imodium from the cholestyramine to control my Revlimid diarrhea and its timing may have interfered with the Revlimid effectiveness. My oncologist advised me that it is just one reading and to 'stay the course' and not be overly concerned. But I wonder what would be the dangers of having the higher kappa. There is plenty to be concerned about the side effects of Revlimid, particularly after 3 years, in my case.
I, too, have been able to lead a fairly active life; keeping busy with my business activities and with pretty tiring outings with the family and grand kids. I really can't complain about my quality of life, either.
Let's hope both of us continue to manage our multiple myelomas for years, decades to come.
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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 all multiple myeloma friends:
I have been extremely busy in finding solution to my existing business. Working as long as on an average fifteen hours a day. Most of the days have been bad for me knees and my knee inflammation flared up. I have tolerated rather than taking pain medicine.
i am off any kind of medicine or vitamins since last seven months, including my maintenance Revlimid. I am honestly enjoying it but i am concerned, psychologically.
My 2017 and 2018 blood test reports are below:
Date Kappa FLC K/L ratio M-spike
(mg/dl) (g/dL)
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
Jul 27 12.00 5.58 1.82
Aug 28 12.80 6.63 1.88
Sep 22 15.8 5.93 1.56
Oct 23 11.3 6.10 1.85
Nov 22 16.5 8.0 2.10
Dec 16 15.9 7.6 2.10
2018
Feb 1 15.2 8.8 2.5
Feb 28 26.5 16.4 2.6
Mar 24 30.8 18.7 2.4
My April report is expected next week. My knee is better since last five days primarily I think because i have slowed down my activities.
My M-spike looks stable but my kappa free light chain level and kappa-lambda ratio is rising. Any comments / suggestions would be helpful. I am meeting my hematologist on April 28 after my this month blood test result.
Thank you.
I have been extremely busy in finding solution to my existing business. Working as long as on an average fifteen hours a day. Most of the days have been bad for me knees and my knee inflammation flared up. I have tolerated rather than taking pain medicine.
i am off any kind of medicine or vitamins since last seven months, including my maintenance Revlimid. I am honestly enjoying it but i am concerned, psychologically.
My 2017 and 2018 blood test reports are below:
Date Kappa FLC K/L ratio M-spike
(mg/dl) (g/dL)
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
Jul 27 12.00 5.58 1.82
Aug 28 12.80 6.63 1.88
Sep 22 15.8 5.93 1.56
Oct 23 11.3 6.10 1.85
Nov 22 16.5 8.0 2.10
Dec 16 15.9 7.6 2.10
2018
Feb 1 15.2 8.8 2.5
Feb 28 26.5 16.4 2.6
Mar 24 30.8 18.7 2.4
My April report is expected next week. My knee is better since last five days primarily I think because i have slowed down my activities.
My M-spike looks stable but my kappa free light chain level and kappa-lambda ratio is rising. Any comments / suggestions would be helpful. I am meeting my hematologist on April 28 after my this month blood test result.
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
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