Coachhoke,
Thank you for your post. I am so happy to read your update.
I do not have answer to your question "but is it necessary to prevent CRAB features?". My hematologist kept mum to this question as well. He is checking my bone lytic lesion by PET/CT scan to see if it has any relation with my creeping up M spike.
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
To all of you:
My September 22, 2016 blood test report came and I do not feel good about the report. I post it along with my past blood test results since I stopped Revlimid and dex.
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
There was no light chain test in May.
I am not taking any chemo since April 24. My light chain was declining and coming towards normal but this month light chain as well as M-spike are creeping up.
One more thing I notice that my neutrophils are above reference range - 79.7 vs. normal reference upper range limit of 75 with a comment relative neutrophilia.
My RBC and hemoglobin are creeping up since I stopped chemo. They were both in the normal range for the last three months.
I had a bacterial infection of the throat for which I got an antibiotic last month. Even after the antibiotic, it is not completely gone. When my throat is dry, it makes me sneeze and teary water starts oozing from my eye. It was at extreme during this September blood test period.
Could my increase in light chain and M-spike be due to the bacterial infection? I also have an inflamed knee joint and auto immune ear disease since last thirty years which are manageable.
I am feeling great but fear is overwhelming.
Thank you.
My September 22, 2016 blood test report came and I do not feel good about the report. I post it along with my past blood test results since I stopped Revlimid and dex.
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
There was no light chain test in May.
I am not taking any chemo since April 24. My light chain was declining and coming towards normal but this month light chain as well as M-spike are creeping up.
One more thing I notice that my neutrophils are above reference range - 79.7 vs. normal reference upper range limit of 75 with a comment relative neutrophilia.
My RBC and hemoglobin are creeping up since I stopped chemo. They were both in the normal range for the last three months.
I had a bacterial infection of the throat for which I got an antibiotic last month. Even after the antibiotic, it is not completely gone. When my throat is dry, it makes me sneeze and teary water starts oozing from my eye. It was at extreme during this September blood test period.
Could my increase in light chain and M-spike be due to the bacterial infection? I also have an inflamed knee joint and auto immune ear disease since last thirty years which are manageable.
I am feeling great but fear is overwhelming.
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
MMF 16,17,
To continue what I said earlier that our journeys are very similar, including anxiety every time I get my lab results:
Date K/L Kappa M-spike Treatment
(g/dL)
May 1.23 1.11 1.00 None
June 1.24 1.86 0.90 2.5 mg Revlimid
July 1.28 2.94 0.65 2.5 mg Revlimid
Aug 1.46 2.28 0.70 2.5 mg Revlimid
Sep 1.23 2.27 0.60 2.5 mg Revlimid
April PET/CT scan shows no activity. No other numbers out of normal range.
I feel great and really wonder if I need the Revlimid at all.
To continue what I said earlier that our journeys are very similar, including anxiety every time I get my lab results:
Date K/L Kappa M-spike Treatment
(g/dL)
May 1.23 1.11 1.00 None
June 1.24 1.86 0.90 2.5 mg Revlimid
July 1.28 2.94 0.65 2.5 mg Revlimid
Aug 1.46 2.28 0.70 2.5 mg Revlimid
Sep 1.23 2.27 0.60 2.5 mg Revlimid
April PET/CT scan shows no activity. No other numbers out of normal range.
I feel great and really wonder if I need the Revlimid at all.
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coachhoke - Name: coachhoke
- When were you/they diagnosed?: Apri 2012
- Age at diagnosis: 71
Re: M-spike creeping up, not on maintenance therapy
Hi MMFeb,
I think an argument could be made that two things have been affecting your markers over the past couple of months.
First, going off the Revlimid has gotten rid of the usual myelosuppressive effect of the drug. So you are seeing recoveries in blood counts and your hemoglobin level, as well as an uptick in free light chain and M-spike production (related to increased overall plasma cell production, including monoclonal plasma cells).
Second, you've also had an infection, which has increased your WBC level and your free light chain level.
The key question is whether your FLC results and M-spike are eventually going to level out, or if they will continue climbing. To me, it seems a bit early to decide whether the leveling off is going to occur. But your doctor has much more experience with these sorts of things, and should be able to give you a much better idea of what probably is going on.
Has your doctor given you any prediction about where he/she things your numbers are heading?
Good luck!
I think an argument could be made that two things have been affecting your markers over the past couple of months.
First, going off the Revlimid has gotten rid of the usual myelosuppressive effect of the drug. So you are seeing recoveries in blood counts and your hemoglobin level, as well as an uptick in free light chain and M-spike production (related to increased overall plasma cell production, including monoclonal plasma cells).
Second, you've also had an infection, which has increased your WBC level and your free light chain level.
The key question is whether your FLC results and M-spike are eventually going to level out, or if they will continue climbing. To me, it seems a bit early to decide whether the leveling off is going to occur. But your doctor has much more experience with these sorts of things, and should be able to give you a much better idea of what probably is going on.
Has your doctor given you any prediction about where he/she things your numbers are heading?
Good luck!
Re: M-spike creeping up, not on maintenance therapy
Hi MMFeb16,15.
Just a few thoughts based on my personal experience as they relate to your latest test results:
I have the light chain only IgG kappa multiple myeloma and have not had any detectable M-spike. However, I believe that Multibilly had pointed out that an increase of 25% in the M-spike is noteworthy. I, too, opted against any transplant.
Your kappa level itself is still below the April 24 reading. However, the kappa / lambda ratio has risen from 1.7 to 2.4. That may not be significant with this single test because that ratio was bouncing between 2.1 and 1.7, without any specific 'trend'. And the recent infection could have certainly affected the latest kappa and kappa-lambda readings.
I had done a fairly extensive search about the impact of viral (and bacterial) infections, flu and flu shots on the kappa level and kappa-lambda ratio back in early 2015 when I was in the midst of my Induction phase and my kappa level and kappa-lambda ratio rose abruptly when I had a high fever viral infection (flu?). It took 2 cycles of Revlimid, Velcade, and dexamethasone (RVD) before my kappa and kappa-lambda ratio came down to the pre-infection levels. The only article I found was that even a flu shot can cause the kappa level to rise 25%. Recently another new topic asked the same question because of similar experience. That is certainly a factor to consider.
I think TerryH has covered these points very well in a technical way.
What level were your neutrophils at before you stopped the Revlimid in April? I really do not know the exact significance of that test, though. I checked my old data and found that my neutrophils did rise from 58 to 72 when I had my flu-like infection and they came down to 60 +/- after the 2 cycles it took to get my kappa level and kappa-lambda ratio down to where all these readings were prior to my infection.
After reading about your experience after stopping the Revlimid when your kappa level and kappa-lambda ratio were very stable (even improved for a while), I asked my oncologist if I could try that. He advised me against it, likely because I am tolerating the alternate day 20 mg Revlimid fairly well.
I can quite relate to your anxiety. I had my routine (every 4-weeks) blood test on Monday and I just got my kappa and kappa / lambda readings, which again were steady at 40 +/- 5% and kappa-lambda ratio at 1.6. I am pretty happy about these test results being steady for many months, but I still hold my breath till I get a confirmation that nothing has changed. Also, my oncologist had told me to wait till these results were reported before he would consider lowering my Revlimid dose to the alternate day 15 mg. That had given me another reason for hoping that my test results are stable.
coachhoke,
I hope your M-spike continues to go down. Your kappa and kappa / lambda readings are completely 'normal' and I hope they stay that way for a very very long time. It is wonderful that you are achieving this with a small 2.5 mg Revlimid.
As I wrote above, my oncologist is against any kind of Revlimid (the only myeloma drug I am on) holiday. However, I hope that I can get my Revlimid dose down to at least the alternate day 10 mg, soon. This alternate day dosing has been much more tolerable and I can work with the alternate day fatigue drowsiness for a few hours.
Just a few thoughts based on my personal experience as they relate to your latest test results:
I have the light chain only IgG kappa multiple myeloma and have not had any detectable M-spike. However, I believe that Multibilly had pointed out that an increase of 25% in the M-spike is noteworthy. I, too, opted against any transplant.
Your kappa level itself is still below the April 24 reading. However, the kappa / lambda ratio has risen from 1.7 to 2.4. That may not be significant with this single test because that ratio was bouncing between 2.1 and 1.7, without any specific 'trend'. And the recent infection could have certainly affected the latest kappa and kappa-lambda readings.
I had done a fairly extensive search about the impact of viral (and bacterial) infections, flu and flu shots on the kappa level and kappa-lambda ratio back in early 2015 when I was in the midst of my Induction phase and my kappa level and kappa-lambda ratio rose abruptly when I had a high fever viral infection (flu?). It took 2 cycles of Revlimid, Velcade, and dexamethasone (RVD) before my kappa and kappa-lambda ratio came down to the pre-infection levels. The only article I found was that even a flu shot can cause the kappa level to rise 25%. Recently another new topic asked the same question because of similar experience. That is certainly a factor to consider.
I think TerryH has covered these points very well in a technical way.
What level were your neutrophils at before you stopped the Revlimid in April? I really do not know the exact significance of that test, though. I checked my old data and found that my neutrophils did rise from 58 to 72 when I had my flu-like infection and they came down to 60 +/- after the 2 cycles it took to get my kappa level and kappa-lambda ratio down to where all these readings were prior to my infection.
After reading about your experience after stopping the Revlimid when your kappa level and kappa-lambda ratio were very stable (even improved for a while), I asked my oncologist if I could try that. He advised me against it, likely because I am tolerating the alternate day 20 mg Revlimid fairly well.
I can quite relate to your anxiety. I had my routine (every 4-weeks) blood test on Monday and I just got my kappa and kappa / lambda readings, which again were steady at 40 +/- 5% and kappa-lambda ratio at 1.6. I am pretty happy about these test results being steady for many months, but I still hold my breath till I get a confirmation that nothing has changed. Also, my oncologist had told me to wait till these results were reported before he would consider lowering my Revlimid dose to the alternate day 15 mg. That had given me another reason for hoping that my test results are stable.
coachhoke,
I hope your M-spike continues to go down. Your kappa and kappa / lambda readings are completely 'normal' and I hope they stay that way for a very very long time. It is wonderful that you are achieving this with a small 2.5 mg Revlimid.
As I wrote above, my oncologist is against any kind of Revlimid (the only myeloma drug I am on) holiday. However, I hope that I can get my Revlimid dose down to at least the alternate day 10 mg, soon. This alternate day dosing has been much more tolerable and I can work with the alternate day fatigue drowsiness for a few hours.
-
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 friends:
Thanks to all of you for your comments and suggestions. I am going to meet my hematologist tomorrow as a more confident person due to your comments.
Dear K_Shash:
My neutrophil level was always normal. Reading has fluctuated between 60 and 67 since April when I left Revlimid plus dexamethasone. August it was 66.
Thank you again.
Thanks to all of you for your comments and suggestions. I am going to meet my hematologist tomorrow as a more confident person due to your comments.
Dear K_Shash:
My neutrophil level was always normal. Reading has fluctuated between 60 and 67 since April when I left Revlimid plus dexamethasone. August it was 66.
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: M-spike creeping up, not on maintenance therapy
Dear All:
I visited my hematologist yesterday. He is not worried about the upward fluctuation in my light chain and M-spike. He says my neutrophils are high because of bacterial infection of throat, and that also could be the reason for modest upward increase in kappa, kappa-lambda ratio, and M-spike.
My hematologist recommended a PET/CT scan and bone marrow biopsy. I am scheduled for it on 14th of this month.
So, I am continuing without treatment (I will not be resuming Revlimid and dex).
Thank you again.
I visited my hematologist yesterday. He is not worried about the upward fluctuation in my light chain and M-spike. He says my neutrophils are high because of bacterial infection of throat, and that also could be the reason for modest upward increase in kappa, kappa-lambda ratio, and M-spike.
My hematologist recommended a PET/CT scan and bone marrow biopsy. I am scheduled for it on 14th of this month.
So, I am continuing without treatment (I will not be resuming Revlimid and dex).
Thank you again.
-
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 friends on the forum:
My October blood test reports came in. I did not get my PET/CT scan and bone marrow biopsy on the 14th as my hematologist was not available.
My October blood test report is added with previous reports in the chart below. My neutrophils reading is normal and down from 79 to 60.
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
In May there was no test for light chains.
I am not on any treatment (Revlimid plus dex). I am feeling great. All my other parameters, such as RBC, hemoglobin, WBC, are in normal range.
My question is: Do I need to go for the PET/CT scan and bone marrow biopsy? Last time I had these two tests was in September 2015 before collection of my stem cells for transplant.
Thank you.
My October blood test reports came in. I did not get my PET/CT scan and bone marrow biopsy on the 14th as my hematologist was not available.
My October blood test report is added with previous reports in the chart below. My neutrophils reading is normal and down from 79 to 60.
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
In May there was no test for light chains.
I am not on any treatment (Revlimid plus dex). I am feeling great. All my other parameters, such as RBC, hemoglobin, WBC, are in normal range.
My question is: Do I need to go for the PET/CT scan and bone marrow biopsy? Last time I had these two tests was in September 2015 before collection of my stem cells for transplant.
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:
M-spike trend is flat since August. That is good! Kappa-lambda bounces around naturally, so I do not think there is a clear signal there of anything amiss.
With regards to PET/CT, I think many locations look to do it annually. Actually, I also think that many centers will try and get a baseline several months after a stem cell transplant. So I would think that the PET/CT does make sense. I hope the news continues good! Good luck to you.
M-spike trend is flat since August. That is good! Kappa-lambda bounces around naturally, so I do not think there is a clear signal there of anything amiss.
With regards to PET/CT, I think many locations look to do it annually. Actually, I also think that many centers will try and get a baseline several months after a stem cell transplant. So I would think that the PET/CT does make sense. I hope the news continues good! Good luck to you.
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JPC - Name: JPC
Re: M-spike creeping up, not on maintenance therapy
MMFeb,
I second what JPC says about your M-spike.
Note that your kappa-lambda ratio went up this time because your lambda free light chain level went down (not because your kappa free light chain level went up). That could be a good sign.
Are you also having your IgA, IgG, and IgM levels tested regularly? If so, what has been happening with them?
I would be tracking those and your hemoglobin and serum calcium levels in addition to your free light chain results and M-spike. I think that all of those results together will give you a more reliable sense of what's going on with the myeloma.
I second what JPC says about your M-spike.
Note that your kappa-lambda ratio went up this time because your lambda free light chain level went down (not because your kappa free light chain level went up). That could be a good sign.
Are you also having your IgA, IgG, and IgM levels tested regularly? If so, what has been happening with them?
I would be tracking those and your hemoglobin and serum calcium levels in addition to your free light chain results and M-spike. I think that all of those results together will give you a more reliable sense of what's going on with the myeloma.
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