Hello everyone,
It has been 3 months since my mothers last tests. I previously described her case in this discussion here in the forum:
"Questions from France about smoldering myeloma," discussion started Apr 22, 2014.
We have received today the new tests and I would like to share them with you and ask a question. For this purpose I have written the essential results here and then I also shared previous exam results of the same laboratory 3 months back to February for 2014.
Please let me know what you think as currently there are some fluctuations that don't seem worrying except for the M-spikes, which are increasing.
Also the leucocytes have dropped a bit.. (worrying?)
Please note that my mother's SPEP shows two peaks, one in the beta region and one in the gamma region. So her M-spike has to be calculated by totaling the M-spikes estimated for the beta and gamma regions. My posting with two actual lab reports (in French) showing this can be seen in the previous forum thread here.
My mother's myeloma type is IgA lambda.
What do you think?
I am really worried to notice that the M-spike keeps rising, although slowly ...
=== October 2014 exams ===
Hemoblogin 116 g/l or 11.6g/dL
Leucoytes 3.97 giga/L
Hematies 3.81 tera/L
Albumin 38.4 g/l
Creatinine 70 umol/l (normal range 45-84)
Renal function Cockroft 63.2 ml/mn (must be over 60)
Renal function MDRD 77.8 ml/mn (must be over 60)
Calcium 2.39 mmol/l or 95.8 mg/l
(Calcium normal range) (2.2-2.55 mmol/l or 88.2-102.3 g/l)
M-spikes
Beta M-spike 17.5 g/L or 1.75g/dL
Gamma M-spike 5.6 g/L or 0.56g/dL
Total 23.1 g/L or 2.31g/dL
=== July 2014 exams ===
Hemoblogin 117 g/l or 11.7g/dL
Leucoytes 5.2 giga/L
Hematies 3.77 tera/L
Albumin 39.3g/l
Creatinine 64 umol/l
Renal function Cockroft 70.4 ml/mn
Renal function MDRD 86.3 ml/mn
Calcium 2.30 mmol/l
M-Spikes
Beta M-spike 15.0 g/L or 1.50 g/dL
Gamma M-spike 5.5 g/L or 0.55 g/dL
Total 20.5 g/L or 2.05 g/dL
=== February 2014 exams ===
Hemoblogin 115 g/l or 11.5 g/dL
Albumin 38,6 g/l
Creatinine 73 umol/l
Renal function Cockroft 61.6 ml/mn
Renal function MDRD 74.4 ml/mn
Calcium 2.43 mmol/l
M-spikes
Beta M-spike 14.2 g/L or 1.42 g/dL
Gamma M-spike 4.3 g/L or 0.43 g/dL
Total 18.5 g/L or 1.85 g/dL
Forums
-
Maro - Who do you know with myeloma?: My mom
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 63
Re: Is my mother's smoldering myeloma progressing?
Hello everyone
It is to my understanding that the danger zone is if the m spike increases by 25%. At this point, my mother has a 4,6 g increase, which is 20%.
However, what I would like to understand is whether the increase is worrying regardless of the time frame or not?
Because what is worrying me is that, at this rate, we may reach the 25% mark by the time the next exams are made.
Please take a moment to give me your opinions ...
Thanks,
Maro
It is to my understanding that the danger zone is if the m spike increases by 25%. At this point, my mother has a 4,6 g increase, which is 20%.
However, what I would like to understand is whether the increase is worrying regardless of the time frame or not?
Because what is worrying me is that, at this rate, we may reach the 25% mark by the time the next exams are made.
Please take a moment to give me your opinions ...
Thanks,
Maro
-
Maro - Who do you know with myeloma?: My mom
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 63
Re: Is my mother's smoldering myeloma progressing?
Hi Maro,
I'm not a physician, so I can't comment on what is happening with your mother's test results based on extensive experience, but here is what I see.
Yes, her M-spike is trending upwards. However, you only have 3 data points, which is hardly enough to get a good sense of what the trend is. In addition, your mother's paraprotein is IgA, and M-spikes are not as easy to determine for IgA type myeloma.
The other side of what is happening with your mother's M-spike is that her hemoglobin, creatinine, and calcium levels are holding steady. I don't see a trend in one direction or the other with those results.
My guess is that you probably will need to wait until the next set of results to really feel comfortable that there is a real trend in the M-spike.
Your mother probably has her immunglobulin levels tested, so do you have those values for the last three sets of tests, i.e., her IgG, IgA, and perhaps one or two other Ig levels? The total level of the IgA can be good to track for patients with IgA myeloma.
I assume she is not having her free light chain levels tested? If she is, those also would be good to track.
You mentioned in the other discussion thread that your mother had 50% plasma cells in her bone marrow at diagnosis. Has that changed?
Finally, has your mother ever had an MRI or PET scan done? MRIs can pick up abnormal areas of the bone marrow, known as focal lesions, and tracking the number of such lesions can be an additional tool for determining if the disease is progressing. The same can be done with the results of PET scans.
Good luck!
I'm not a physician, so I can't comment on what is happening with your mother's test results based on extensive experience, but here is what I see.
Yes, her M-spike is trending upwards. However, you only have 3 data points, which is hardly enough to get a good sense of what the trend is. In addition, your mother's paraprotein is IgA, and M-spikes are not as easy to determine for IgA type myeloma.
The other side of what is happening with your mother's M-spike is that her hemoglobin, creatinine, and calcium levels are holding steady. I don't see a trend in one direction or the other with those results.
My guess is that you probably will need to wait until the next set of results to really feel comfortable that there is a real trend in the M-spike.
Your mother probably has her immunglobulin levels tested, so do you have those values for the last three sets of tests, i.e., her IgG, IgA, and perhaps one or two other Ig levels? The total level of the IgA can be good to track for patients with IgA myeloma.
I assume she is not having her free light chain levels tested? If she is, those also would be good to track.
You mentioned in the other discussion thread that your mother had 50% plasma cells in her bone marrow at diagnosis. Has that changed?
Finally, has your mother ever had an MRI or PET scan done? MRIs can pick up abnormal areas of the bone marrow, known as focal lesions, and tracking the number of such lesions can be an additional tool for determining if the disease is progressing. The same can be done with the results of PET scans.
Good luck!
Re: Is my mother's smoldering myeloma progressing?
Hello Ian,
I thank you for taking the time and effort to reply.
I will answer the questions that I think I know the answers to. I am still pretty new to all of this :
1) Regarding the levels of her Iga. The only thing I know from her July results is that she has a total of 79.7 g/L of protein, out of which I have the following percentages:
Albumin 48.2% = 37.4 g
Alpha 1 Globulin 3.1% = 2.5 g
Alpha 2 Globulin 8.2% = 6.5 g
Beta Globulin 29.8% = 23.8 g
out of which m spike 22% = 17.5 g
Gamma Globulin 10.7% = 8.5 g
out of which spike 7% = 5.6 g
A/G ratio 0.93%
No protein in urine.
I am really not sure if I have answered your question correctly. But this is all I have on the result sheet. I attached a photo of these results.
2) Her light chains were tested just once a while back (in April) and the results revealed an FLC ratio of 0.11. I can get the details for that the next time I go see my mother. No FLC testing has been prescribed since.
3) She had 50% BMB result in April when the test was made. There has been no test since. I am not sure how often this must be repeated.
It is to my understanding that it may be lower (or higher) depending on the pocket the doctor hit when he made this exam. A family doctor (friend) of ours says that it may be lower considering her low IgA levels and the absence of CRAB symptoms and suggests we could repeat it.
The onco however which we consult has not prescribed a new BMB.
4) Full body MRI was made in April as well. No focal lesions were found at the time (except for a little needle hole which the doctor said is most probably related to the BMB which had left a mark).
It was combined with a full skeleton survey which revealed nothing as well.
No MRI/scan was made since.
Let me know your thoughts based on the information given above.
Many thanks
I thank you for taking the time and effort to reply.
I will answer the questions that I think I know the answers to. I am still pretty new to all of this :
1) Regarding the levels of her Iga. The only thing I know from her July results is that she has a total of 79.7 g/L of protein, out of which I have the following percentages:
Albumin 48.2% = 37.4 g
Alpha 1 Globulin 3.1% = 2.5 g
Alpha 2 Globulin 8.2% = 6.5 g
Beta Globulin 29.8% = 23.8 g
out of which m spike 22% = 17.5 g
Gamma Globulin 10.7% = 8.5 g
out of which spike 7% = 5.6 g
A/G ratio 0.93%
No protein in urine.
I am really not sure if I have answered your question correctly. But this is all I have on the result sheet. I attached a photo of these results.
2) Her light chains were tested just once a while back (in April) and the results revealed an FLC ratio of 0.11. I can get the details for that the next time I go see my mother. No FLC testing has been prescribed since.
3) She had 50% BMB result in April when the test was made. There has been no test since. I am not sure how often this must be repeated.
It is to my understanding that it may be lower (or higher) depending on the pocket the doctor hit when he made this exam. A family doctor (friend) of ours says that it may be lower considering her low IgA levels and the absence of CRAB symptoms and suggests we could repeat it.
The onco however which we consult has not prescribed a new BMB.
4) Full body MRI was made in April as well. No focal lesions were found at the time (except for a little needle hole which the doctor said is most probably related to the BMB which had left a mark).
It was combined with a full skeleton survey which revealed nothing as well.
No MRI/scan was made since.
Let me know your thoughts based on the information given above.
Many thanks
- Capture.JPG (63.42 KiB) Viewed 1820 times
-
Maro - Who do you know with myeloma?: My mom
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 63
Re: Is my mother's smoldering myeloma progressing?
Dear Maro,
Your concern about the possibility of progression is justified. A marrow involvement of 50% is undoubtedly on the higher side. As you may know, there is research suggesting that marrow involvement of 60% or greater at the time of a smoldering myeloma diagnosis is associated with a 90 percent risk of progression to symptomatic myeloma within two years.
In addition to your mother's comparatively high marrow involvement, her M-spike is increasing (0.45 / 1.85 = almost a 25% increase). Thus, it may be worthwhile to arrange a PET scan to assess if there are area(s) of active involvement. If negative, a bone marrow biopsy may be useful at this juncture.
I would recommend a formal evaluation at a myeloma center.
Good luck, and please let us know if you have any further questions, and keep us updated on your mother's situation.
Your concern about the possibility of progression is justified. A marrow involvement of 50% is undoubtedly on the higher side. As you may know, there is research suggesting that marrow involvement of 60% or greater at the time of a smoldering myeloma diagnosis is associated with a 90 percent risk of progression to symptomatic myeloma within two years.
In addition to your mother's comparatively high marrow involvement, her M-spike is increasing (0.45 / 1.85 = almost a 25% increase). Thus, it may be worthwhile to arrange a PET scan to assess if there are area(s) of active involvement. If negative, a bone marrow biopsy may be useful at this juncture.
I would recommend a formal evaluation at a myeloma center.
Good luck, and please let us know if you have any further questions, and keep us updated on your mother's situation.
-
Dr. Prashant Kapoor - Name: Prashant Kapoor, M.D.
Beacon Medical Advisor
Re: Is my mother's smoldering myeloma progressing?
Thank you for your reply Dr. Kapoor.
My mother has done both an MRI and BMB in April of 2014. No focal lesions were found in April and the BMB revealed 50% plasma cell involvement.
Should these exams be repeated despite the short time frame that has elapsed since April?
We are currently followed by Dr Lionel Karlin at CHU Lyon who was recommended to me by Dr Xavier LELEU at CHU Lille, whom I have heard is a reputable myeloma specialist.
Should I suggest to our onco to repeat an MRI/PET and BMB?
Also, if we have a 90% risk of progression with her current BMB is it proportional with a 50% case and is the BMB the only determining factor?
Thanks in advance.
My mother has done both an MRI and BMB in April of 2014. No focal lesions were found in April and the BMB revealed 50% plasma cell involvement.
Should these exams be repeated despite the short time frame that has elapsed since April?
We are currently followed by Dr Lionel Karlin at CHU Lyon who was recommended to me by Dr Xavier LELEU at CHU Lille, whom I have heard is a reputable myeloma specialist.
Should I suggest to our onco to repeat an MRI/PET and BMB?
Also, if we have a 90% risk of progression with her current BMB is it proportional with a 50% case and is the BMB the only determining factor?
Thanks in advance.
-
Maro - Who do you know with myeloma?: My mom
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 63
Re: Is my mother's smoldering myeloma progressing?
Hello Maro
I am wondering how your mum is keeping and how she is coping with all this? It must be hard for you both coming to terms with her illness. For me, I am glad that it is me dealing with this disease and not my mum or dad. I think I would have found that even more devastating. Do you have people around you for support?
Best wishes to you and your mum, Kay x
I am wondering how your mum is keeping and how she is coping with all this? It must be hard for you both coming to terms with her illness. For me, I am glad that it is me dealing with this disease and not my mum or dad. I think I would have found that even more devastating. Do you have people around you for support?
Best wishes to you and your mum, Kay x
-
blessthischick - Name: Blessthischick
- Who do you know with myeloma?: Me (SMM)
- When were you/they diagnosed?: Oct 10th 2013
- Age at diagnosis: 46
Re: Is my mother's smoldering myeloma progressing?
I would recommend performing additional tests only if the physician treating her would consider changing the management of her disease based on any additional information obtained through these tests.
It is important to first figure out whether there is evidence of biochemical progression only, or if there is truly some skeletal damage that would warrant further therapy. In this regard, a PET-CT scan would be a good, non-invasive start and further investigations / management would be dependent on the results of the scans.
It is important to first figure out whether there is evidence of biochemical progression only, or if there is truly some skeletal damage that would warrant further therapy. In this regard, a PET-CT scan would be a good, non-invasive start and further investigations / management would be dependent on the results of the scans.
-
Dr. Prashant Kapoor - Name: Prashant Kapoor, M.D.
Beacon Medical Advisor
Re: Is my mother's smoldering myeloma progressing?
Hello everyone,
It has been a while since I've posted regarding my mothers SMM.
There have been some updates lately and I would really like your opinions.
I will be meeting with my mothers doc on Tuesday and I want to be sure that I've got the right questions prior to our meeting.
You will find below my moms latest numbers.
My main concern is as follows :
-Her M. SPIKE has been increasing at each lab test (from 18g/L to 31.6g/L over the past year and a half).
-Her Hemoglobin is reaching the danger zone
However, she has no CRAB symptoms, no bone pain.
What also worries me is that her Doctor disregards these changes and says that since there are no signs of Phyiscal déterioration or CRAB symptoms then there is no need to make any further exams. When I met with him in February he did not think it was necessary to make a new PET/MRI nor BMB (I was following Dr Prashant Kapoor's advice).
I am concerned and at the same time I aknowledge the fact that as long as there are no CRAB symptoms then my mom is still asymptomatic.
But the M Spike keeps creeping up.. Can it ever stop? Can one have a high M. Spike and remain free from symptoms? To what extent...?
Would anyone recommend any questions that I shoud ask my mother's onco on Tuesday?
Please help.....
============ June 2015 exams ============
Hemoblogin 105 g/l or 10.5g/dL
Leucoytes 3.78 giga/L
Hematies 3.24 tera/L
Albumin 35.9 g/l
Creatinine 71 umol/l (normal range 45-84)
Calcium 2.32 mmol/l or 93 mg/l
(Calcium normal range) (2.2-2.55 mmol/l or 88.2-102.3 g/l)
M-spikes
Beta M-spike 24.6 g/L or 2.46g/dL
Gamma M-spike 7 g/L or 0.7g/dL
Total 31.6 g/L or 3.16g/dL
IGA type SMM.
============ February 2015 exams ============
Hemoblogin 110 g/l or 11.0g/dL
Leucoytes 4.55 giga/L
Hematies 3.45 tera/L
Albumin 40.6 g/l
Creatinine 81 umol/l (normal range 45-84)
Calcium 2.31 mmol/l or 92.6 mg/l
(Calcium normal range) (2.2-2.55 mmol/l or 88.2-102.3 g/l)
M-spikes
Beta M-spike 20 g/L or 2g/dL
Gamma M-spike 5.5 g/L or 0.55g/dL
Total 25.5 g/L or 2.55g/dL
============October 2014 exams ============
Hemoblogin 116 g/l or 11.6g/dL
Leucoytes 3.97 giga/L
Hematies 3.81 tera/L
Albumin 38.4 g/l
Creatinine 70 umol/l (normal range 45-84)
Renal function Cockroft 63.2 ml/mn (must be over 60)
Renal function MDRD 77.8 ml/mn (must be over 60)
Calcium 2.39 mmol/l or 95.8 mg/l
(Calcium normal range) (2.2-2.55 mmol/l or 88.2-102.3 g/l)
M-spikes
Beta M-spike 17.5 g/L or 1.75g/dL
Gamma M-spike 5.6 g/L or 0.56g/dL
Total 23.1 g/L or 2.31g/dL
============July 2014 exams ============
Hemoblogin 117 g/l or 11.7g/dL
Leucoytes 5.2 giga/L
Hematies 3.77 tera/L
Albumin 39.3g/l
Creatinine 64 umol/l
Renal function Cockroft 70.4 ml/mn
Renal function MDRD 86.3 ml/mn
Calcium 2.30 mmol/l
M-Spikes
Beta M-spike 15.0 g/L or 1.50 g/dL
Gamma M-spike 5.5 g/L or 0.55 g/dL
Total 20.5 g/L or 2.05 g/dL
============ February 2014 exams ============
Hemoblogin 115 g/l or 11.5 g/dL
Albumin 38,6 g/l
Creatinine 73 umol/l
Renal function Cockroft 61.6 ml/mn
Renal function MDRD 74.4 ml/mn
Calcium 2.43 mmol/l
M-spikes
Beta M-spike 14.2 g/L or 1.42 g/dL
Gamma M-spike 4.3 g/L or 0.43 g/dL
Total 18.5 g/L or 1.85 g/dL
It has been a while since I've posted regarding my mothers SMM.
There have been some updates lately and I would really like your opinions.
I will be meeting with my mothers doc on Tuesday and I want to be sure that I've got the right questions prior to our meeting.
You will find below my moms latest numbers.
My main concern is as follows :
-Her M. SPIKE has been increasing at each lab test (from 18g/L to 31.6g/L over the past year and a half).
-Her Hemoglobin is reaching the danger zone
However, she has no CRAB symptoms, no bone pain.
What also worries me is that her Doctor disregards these changes and says that since there are no signs of Phyiscal déterioration or CRAB symptoms then there is no need to make any further exams. When I met with him in February he did not think it was necessary to make a new PET/MRI nor BMB (I was following Dr Prashant Kapoor's advice).
I am concerned and at the same time I aknowledge the fact that as long as there are no CRAB symptoms then my mom is still asymptomatic.
But the M Spike keeps creeping up.. Can it ever stop? Can one have a high M. Spike and remain free from symptoms? To what extent...?
Would anyone recommend any questions that I shoud ask my mother's onco on Tuesday?
Please help.....
============ June 2015 exams ============
Hemoblogin 105 g/l or 10.5g/dL
Leucoytes 3.78 giga/L
Hematies 3.24 tera/L
Albumin 35.9 g/l
Creatinine 71 umol/l (normal range 45-84)
Calcium 2.32 mmol/l or 93 mg/l
(Calcium normal range) (2.2-2.55 mmol/l or 88.2-102.3 g/l)
M-spikes
Beta M-spike 24.6 g/L or 2.46g/dL
Gamma M-spike 7 g/L or 0.7g/dL
Total 31.6 g/L or 3.16g/dL
IGA type SMM.
============ February 2015 exams ============
Hemoblogin 110 g/l or 11.0g/dL
Leucoytes 4.55 giga/L
Hematies 3.45 tera/L
Albumin 40.6 g/l
Creatinine 81 umol/l (normal range 45-84)
Calcium 2.31 mmol/l or 92.6 mg/l
(Calcium normal range) (2.2-2.55 mmol/l or 88.2-102.3 g/l)
M-spikes
Beta M-spike 20 g/L or 2g/dL
Gamma M-spike 5.5 g/L or 0.55g/dL
Total 25.5 g/L or 2.55g/dL
============October 2014 exams ============
Hemoblogin 116 g/l or 11.6g/dL
Leucoytes 3.97 giga/L
Hematies 3.81 tera/L
Albumin 38.4 g/l
Creatinine 70 umol/l (normal range 45-84)
Renal function Cockroft 63.2 ml/mn (must be over 60)
Renal function MDRD 77.8 ml/mn (must be over 60)
Calcium 2.39 mmol/l or 95.8 mg/l
(Calcium normal range) (2.2-2.55 mmol/l or 88.2-102.3 g/l)
M-spikes
Beta M-spike 17.5 g/L or 1.75g/dL
Gamma M-spike 5.6 g/L or 0.56g/dL
Total 23.1 g/L or 2.31g/dL
============July 2014 exams ============
Hemoblogin 117 g/l or 11.7g/dL
Leucoytes 5.2 giga/L
Hematies 3.77 tera/L
Albumin 39.3g/l
Creatinine 64 umol/l
Renal function Cockroft 70.4 ml/mn
Renal function MDRD 86.3 ml/mn
Calcium 2.30 mmol/l
M-Spikes
Beta M-spike 15.0 g/L or 1.50 g/dL
Gamma M-spike 5.5 g/L or 0.55 g/dL
Total 20.5 g/L or 2.05 g/dL
============ February 2014 exams ============
Hemoblogin 115 g/l or 11.5 g/dL
Albumin 38,6 g/l
Creatinine 73 umol/l
Renal function Cockroft 61.6 ml/mn
Renal function MDRD 74.4 ml/mn
Calcium 2.43 mmol/l
M-spikes
Beta M-spike 14.2 g/L or 1.42 g/dL
Gamma M-spike 4.3 g/L or 0.43 g/dL
Total 18.5 g/L or 1.85 g/dL
-
Maro - Who do you know with myeloma?: My mom
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 63
Re: Is my mother's smoldering myeloma progressing?
Maro,
My question would be how does the doctor know that she does not have any CRAB symptoms without another PET scan or MRI? Things are changing in her lab work. I am not a doctor, but bone damage is considered organ damage, and I do not think lab work along can show this. What is her bone density?
I also have IgA, light chain lambda multiple myeloma. I was first diagnosed with osteoporosis when I had compression fractures to my lower back due to a bicycle accident in January of 2014. My skeleton x-rays did not show any lesions. After a visit to Mayo Clinic in Arizona in December of 2014, it was suggested that I have a PET Scan. I had 30% plasma cells and an M-spike of 2 g/dL at the time. My IgA was very high – about 4000. The scan showed lesions. How fast can this change? I don't know. In France, it may be harder for a doctor to justify a PET scan and or MRI.
Good luck with your Mother. We have great meds for multiple myeloma available now compared to just 5 or 10 years ago. Things are changing rapidly. I will be 65 next month. I feel healthy and I am active. I continue to ride my bicycle and I have cycled many passes in the Pyrenees just 2 years ago. I am scheduled for a stem cell transplant next month. Doctor thinks this will give me a longer deeper remission.
Mary
My question would be how does the doctor know that she does not have any CRAB symptoms without another PET scan or MRI? Things are changing in her lab work. I am not a doctor, but bone damage is considered organ damage, and I do not think lab work along can show this. What is her bone density?
I also have IgA, light chain lambda multiple myeloma. I was first diagnosed with osteoporosis when I had compression fractures to my lower back due to a bicycle accident in January of 2014. My skeleton x-rays did not show any lesions. After a visit to Mayo Clinic in Arizona in December of 2014, it was suggested that I have a PET Scan. I had 30% plasma cells and an M-spike of 2 g/dL at the time. My IgA was very high – about 4000. The scan showed lesions. How fast can this change? I don't know. In France, it may be harder for a doctor to justify a PET scan and or MRI.
Good luck with your Mother. We have great meds for multiple myeloma available now compared to just 5 or 10 years ago. Things are changing rapidly. I will be 65 next month. I feel healthy and I am active. I continue to ride my bicycle and I have cycled many passes in the Pyrenees just 2 years ago. I am scheduled for a stem cell transplant next month. Doctor thinks this will give me a longer deeper remission.
Mary
-
mary dahl
11 posts
• Page 1 of 2 • 1, 2