Thank you everyone.
I am at a traveling location I frequent often for business. I have a permanent hematologist, suggested by the U.S. embassy, who is trained in the USA and is a visiting professor at two U.S. medical schools. On his suggestion, I had a PET/CT scan.
My last PET/CT scan done in the USA in September 2015 summary by my hematologist reads,
"There was a lesion in the left second rib and the anterior L5 vertebral body and left half of T1 vertebral body".
This PET/CT scan under "Bones" reads:
1. Osteopenia and early degenerative changes seen.
2. D7 vertebral body shows a rounded lytic lesion.
"Thorax" reads:
1. Both lungs show subpleural fibrosis most prominent in lower lobes.
2. No significant lymph nodes
Final impression:
PET negative for metabolically active disease.
Is their anything to worry?
I do not understand lytic lesion being in different area L5 and T1 last year but now in D7. Also, no mention of L5 and T1 in current PET/CT scan.
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
I have an update on my lab results.
As a reminder, I was diagnosed with IgG kappa Stage II multiple myeloma on February 16, 2015. After twelve cycles of Revlimid plus dexamethasone, I stopped taking it and continued with Zometa every three months.
My blood test summary is :
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
In May there was no test for light chains.
I am not on any treatment (that is, I'm not taking Revlimid plus dex any longer). I am feeling great. All my other parameters, such as RBC, hemoglobin, WBC, are in normal range. However, M-spike and kappa creeping up worries me. I will see my hematologist after January test result.
Any suggestions or comments?
As a reminder, I was diagnosed with IgG kappa Stage II multiple myeloma on February 16, 2015. After twelve cycles of Revlimid plus dexamethasone, I stopped taking it and continued with Zometa every three months.
My blood test summary is :
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
In May there was no test for light chains.
I am not on any treatment (that is, I'm not taking Revlimid plus dex any longer). I am feeling great. All my other parameters, such as RBC, hemoglobin, WBC, are in normal range. However, M-spike and kappa creeping up worries me. I will see my hematologist after January test result.
Any suggestions or comments?
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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
Hi MMFeb,
The last few months of your results certainly suggest that there's a trend to an increasing M-spike and free light chain ratio. I suspect your doctors will probably recommend that you go back on treatment with Revlimid, based on what a lot of doctors are doing with myeloma patients these days. It's possible, however, that they may be willing to wait to a month or two more to see if there is any sign your lab results are level off.
In any case, good luck, and keep us posted on how things develop further.
The last few months of your results certainly suggest that there's a trend to an increasing M-spike and free light chain ratio. I suspect your doctors will probably recommend that you go back on treatment with Revlimid, based on what a lot of doctors are doing with myeloma patients these days. It's possible, however, that they may be willing to wait to a month or two more to see if there is any sign your lab results are level off.
In any case, good luck, and keep us posted on how things develop further.
Re: M-spike creeping up, not on maintenance therapy
MMFeb,
I took a drug free holiday for all of 2015 until June of 2016 when my M-spike kept creeping up.
All of 2015, while taking NO drugs, my M-spike hovered around 0.2 g/dL. Then in January of 2016 it began trending upward, and when it reached 1.0 g/dL in May, I decided to start back on Revlimid (no dex).
Here is the results in 2016. Note: no other blood results have ever been out of normal range.
Date M-spike Medication
(g/dL)
2016
Jan 0.6 None
Feb 0.7 "
Mar 0.9 "
Apr 0.6 "
May 1.0 "
Jun 0.9 "
Jul 0.65 Revlimid 2.5 mg
Aug 0.70 "
Sep 0.60 "
Oct 0.55 "
Nov 0.60 "
Dec 0.50 "
2017
Jan 0.40 Revlimid 2.5 mg
I'm having PET/CT scan at the end of February, and if it shows no activity, I plan to take another holiday.
I took a drug free holiday for all of 2015 until June of 2016 when my M-spike kept creeping up.
All of 2015, while taking NO drugs, my M-spike hovered around 0.2 g/dL. Then in January of 2016 it began trending upward, and when it reached 1.0 g/dL in May, I decided to start back on Revlimid (no dex).
Here is the results in 2016. Note: no other blood results have ever been out of normal range.
Date M-spike Medication
(g/dL)
2016
Jan 0.6 None
Feb 0.7 "
Mar 0.9 "
Apr 0.6 "
May 1.0 "
Jun 0.9 "
Jul 0.65 Revlimid 2.5 mg
Aug 0.70 "
Sep 0.60 "
Oct 0.55 "
Nov 0.60 "
Dec 0.50 "
2017
Jan 0.40 Revlimid 2.5 mg
I'm having PET/CT scan at the end of February, and if it shows no activity, I plan to take another holiday.
-
coachhoke - Name: coachhoke
- When were you/they diagnosed?: Apri 2012
- Age at diagnosis: 71
Re: M-spike creeping up, not on maintenance therapy
Thank you everyone for suggestions. Yes, I have been disturbed and away from Internet on a business cum relaxation trip combined with controlled diet, yoga and meditation.
I add my January 19, 2017 blood test report.
I have an update on my lab results.
As a reminder, I was diagnosed with IgG kappa Stage II multiple myeloma on February 16, 2015. After twelve cycles of Revlimid plus dexamethasone, I stopped taking it and continued with Zometa every three months.
My blood test summary is :
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
Jan 18 7.5 4.0 1.12
In May there was no test for light chains.
I am not on any treatment (that is, I'm not taking Revlimid plus dex any longer). I am feeling great. All my other parameters, such as RBC, hemoglobin, WBC, are in normal range as last month. However, M-spike is at same level as last month. Kappa creeping up. I will see my hematologist after test on February 22nd and its result.
Any suggestions or comments?
I add my January 19, 2017 blood test report.
I have an update on my lab results.
As a reminder, I was diagnosed with IgG kappa Stage II multiple myeloma on February 16, 2015. After twelve cycles of Revlimid plus dexamethasone, I stopped taking it and continued with Zometa every three months.
My blood test summary is :
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
Jan 18 7.5 4.0 1.12
In May there was no test for light chains.
I am not on any treatment (that is, I'm not taking Revlimid plus dex any longer). I am feeling great. All my other parameters, such as RBC, hemoglobin, WBC, are in normal range as last month. However, M-spike is at same level as last month. Kappa creeping up. I will see my hematologist after test on February 22nd and its result.
Any suggestions or comments?
-
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
I add my February 20, 2017 blood test report.
I have an update on my lab results.
As a reminder, I was diagnosed with IgG kappa Stage II multiple myeloma on February 16, 2015. After twelve cycles of Revlimid plus dexamethasone, I stopped taking it and continued with Zometa every three months.
My blood test summary starting in April 2016 is :
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
In May 2016 there was no test for light chains.
I am not on any treatment (that is, I'm not taking Revlimid plus dex any longer). I am feeling great. All my other parameters, such as RBC, hemoglobin, WBC, are in normal range as of last month. However, my M-spike is at the same level as last month. Kappa and kappa-lambda ratio are showing signs of going down.
I don't like to start treatment again. Almost one year I am without any treatment except Zometa 4 mg every three month.
Have I reached a plateau?
I have an update on my lab results.
As a reminder, I was diagnosed with IgG kappa Stage II multiple myeloma on February 16, 2015. After twelve cycles of Revlimid plus dexamethasone, I stopped taking it and continued with Zometa every three months.
My blood test summary starting in April 2016 is :
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
In May 2016 there was no test for light chains.
I am not on any treatment (that is, I'm not taking Revlimid plus dex any longer). I am feeling great. All my other parameters, such as RBC, hemoglobin, WBC, are in normal range as of last month. However, my M-spike is at the same level as last month. Kappa and kappa-lambda ratio are showing signs of going down.
I don't like to start treatment again. Almost one year I am without any treatment except Zometa 4 mg every three month.
Have I reached a plateau?
-
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
Hi MMFeb16,
You asked:
I do not see any sign of plateau. Why do you think there is one? Both the kappa free light chain level and M-spike are showing a steady rise when compared to your tests from late last year.
If you do not mind my asking, have you and your doctor agreed to a criteria for your individual case with regard to when to restart treatment? It is inevitable that you will need to restart treatment given that your induction therapy was 12 cycles of Revlimid and dex. It seems like you would have a lot less to worry about if you had a defined criteria as to when treatment would be necessary as opposed to looking at it on a month by month basis.
Mark
You asked:
Have I reached a plateau?
I do not see any sign of plateau. Why do you think there is one? Both the kappa free light chain level and M-spike are showing a steady rise when compared to your tests from late last year.
If you do not mind my asking, have you and your doctor agreed to a criteria for your individual case with regard to when to restart treatment? It is inevitable that you will need to restart treatment given that your induction therapy was 12 cycles of Revlimid and dex. It seems like you would have a lot less to worry about if you had a defined criteria as to when treatment would be necessary as opposed to looking at it on a month by month basis.
Mark
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Mark11
Re: M-spike creeping up, not on maintenance therapy
Hi MMFeb16, 15,
To restart treatment or not is a highly individual decision. My case is very, very similar to yours. I stopped Revlimid and dexamethasone in August 2014 due to edema and excessive weight gain. My M-spike then was around 1.1 g/dL (11 g/l), I think, and IgG around 1200. My oncologist and I had agreed to possibly start treatment again around 3500 IgG. My M-spike and also IgG have gone up and down during this period and IgG is now at about 3000 plus/minus. I feel great, super great. Of course, I am not too worried about these numbers as I started out with about 7400 IgG, in December 2012.
To me personally quality of life is the deciding factor. When you make your decision, remember you can always change it.
Kate
To restart treatment or not is a highly individual decision. My case is very, very similar to yours. I stopped Revlimid and dexamethasone in August 2014 due to edema and excessive weight gain. My M-spike then was around 1.1 g/dL (11 g/l), I think, and IgG around 1200. My oncologist and I had agreed to possibly start treatment again around 3500 IgG. My M-spike and also IgG have gone up and down during this period and IgG is now at about 3000 plus/minus. I feel great, super great. Of course, I am not too worried about these numbers as I started out with about 7400 IgG, in December 2012.
To me personally quality of life is the deciding factor. When you make your decision, remember you can always change it.
Kate
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Kate - Name: Kate
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Dec. 2012
Re: M-spike creeping up, not on maintenance therapy
Dear Mark11 and Kate:
Thank you.
Kate: I am very much in line of your thinking which you expressed on August 27, 2016 and again on March 6 above. My hematologist understands my desire for a quality life. The last two months of treatment (Revlimid plus dex) were unbearable. In addition to normal side effects, I was losing memory.
Mark: My light chain has shown downward trend. And M-spike has not shown upward trend like before. So, I felt it is stable. Technically I may be wrong.
I am an extreme G6PD deficient person. No hematologist or physician advised me to go on G6PD diet restriction. I researched on my own. I am on diet restriction since last six weeks. I feel great, and I notice sign of peripheral neuropathy, inflamed knee joints pain, disappearing. I am not taking any pain medicine for knee joint pain (NSAID), which I was taking on a daily basis since I started G6PD restricted diet. I also found out that these pain killers are not advisable for G6PD deficient person.
My monthly blood test is on March 21. Let us see what comes out. I am worried, but like I was couple of weeks ago.
Thank you again Mark 11 and Kate.
Thank you.
Kate: I am very much in line of your thinking which you expressed on August 27, 2016 and again on March 6 above. My hematologist understands my desire for a quality life. The last two months of treatment (Revlimid plus dex) were unbearable. In addition to normal side effects, I was losing memory.
Mark: My light chain has shown downward trend. And M-spike has not shown upward trend like before. So, I felt it is stable. Technically I may be wrong.
I am an extreme G6PD deficient person. No hematologist or physician advised me to go on G6PD diet restriction. I researched on my own. I am on diet restriction since last six weeks. I feel great, and I notice sign of peripheral neuropathy, inflamed knee joints pain, disappearing. I am not taking any pain medicine for knee joint pain (NSAID), which I was taking on a daily basis since I started G6PD restricted diet. I also found out that these pain killers are not advisable for G6PD deficient person.
My monthly blood test is on March 21. Let us see what comes out. I am worried, but like I was couple of weeks ago.
Thank you again Mark 11 and Kate.
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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
Wish you all the best, MMfeb16,15.
I know how anxious you must feel, particularly for a couple of days between the blood tests and the kappa and lambda readings are available. I just went through that last week.
I, too, have the light chain only, IgG kappa myeloma. No M-spike because is the nonsecretory kind. My anxiety has been due to the concerns about the adverse effect of stopping all alcohol. My kappa jumped up from the 40+/- 5% (mg/L) level to 50+, 4 weeks after I stopped all alcohol intake for 4 weeks, and it did come down a bit to 47.6 in the last Monday's blood test. I am continuing to stay away from all the alcohol. But I wonder if alcohol, like the dex my Oncologist doesn't want me to use at all, could be helping the Revlimid to be more effective at small doses.
I follow your posts closely and your experience may help me decide if I could take an extended treatment holiday. My diarrhea is getting worse. Stopping all alcohol hasn't helped at all. I am taking omaprezole (Prilosec, Losec) daily and Zantac (ranitidine) as needed. Overall, I am managing OK, but I get muscle pain and cramps, and I tire easily, too. Of course, my oncologist is against any Revlimid holiday. I think the oncologists cannot really recommend that because there is no published research results on such specific questions. Therefore, your experience would be a great reference point for me.
In any case, you have been staying off treatment for almost a year and you have done almost as well as an average patient after an autologous stem cell transplant (ASCT)! Hard to tell because when the "average" drug-free span after ASCT is about 2 of 2.5 years before relapse, but the 'relapse' is defined as over 200 mg/L for the kappa or lambda level OR for the kappa/lambda ratio to be over 100. That is my understanding after reading some discussion on this topic.
Again, I hope you have had excellent blood test results in March and you continue to feel great. That quality of life consideration is very important to me, too.
I know how anxious you must feel, particularly for a couple of days between the blood tests and the kappa and lambda readings are available. I just went through that last week.
I, too, have the light chain only, IgG kappa myeloma. No M-spike because is the nonsecretory kind. My anxiety has been due to the concerns about the adverse effect of stopping all alcohol. My kappa jumped up from the 40+/- 5% (mg/L) level to 50+, 4 weeks after I stopped all alcohol intake for 4 weeks, and it did come down a bit to 47.6 in the last Monday's blood test. I am continuing to stay away from all the alcohol. But I wonder if alcohol, like the dex my Oncologist doesn't want me to use at all, could be helping the Revlimid to be more effective at small doses.
I follow your posts closely and your experience may help me decide if I could take an extended treatment holiday. My diarrhea is getting worse. Stopping all alcohol hasn't helped at all. I am taking omaprezole (Prilosec, Losec) daily and Zantac (ranitidine) as needed. Overall, I am managing OK, but I get muscle pain and cramps, and I tire easily, too. Of course, my oncologist is against any Revlimid holiday. I think the oncologists cannot really recommend that because there is no published research results on such specific questions. Therefore, your experience would be a great reference point for me.
In any case, you have been staying off treatment for almost a year and you have done almost as well as an average patient after an autologous stem cell transplant (ASCT)! Hard to tell because when the "average" drug-free span after ASCT is about 2 of 2.5 years before relapse, but the 'relapse' is defined as over 200 mg/L for the kappa or lambda level OR for the kappa/lambda ratio to be over 100. That is my understanding after reading some discussion on this topic.
Again, I hope you have had excellent blood test results in March and you continue to feel great. That quality of life consideration is very important to me, too.
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
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