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Re: Questions from France about smoldering myeloma
How does smoldering multiple myeloma differ from a VGPR?
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coachhoke - Name: coachhoke
- When were you/they diagnosed?: Apri 2012
- Age at diagnosis: 71
Re: Questions from France about smoldering myeloma
Hello everyone.
I received today the Cytogenetics results (FISH).
Here is the conclusion in French, which i will translate in the hope that some of you may help me shed light on the meaning of all this:
Multibilly, Nancy, please help
--CONCLUSION—
L’hybridation in Situ fluorescente réalisée:
-ne met PAS en évidence de délétion du gène p53 dans 100% des noyaux analysés (200 noyaux analysés)
-met en évidence la perte d’un des 2 locl D13S319 (13q14) et D13S1020 (13q34) dans 75% de noyaux analysés (200 noyaux analysés). Ce profil cytogénétique est en faveur d’une monosomie 13.
-L’hybridation in situ fluorescence réalisée à l’aide de la sonde IGH@/MAF montre une fusion IGH@MAF dans 85% des noyaux analysés équivalent moléculaire de la translocation t(14;16)(q32;q23) (200 noyaux analysés)
Au TOTAL PRESENCE D’UN FACTEUR CYTOGENETIQUE DE PRONOSTIC PEJORATIF (FUSION IGH MAF)
------
Translation:
The study shows:
-No deletion of gene p53 (17p13) in 100% of the analysed nuclei
-Loss of one of the two D13S319 (13q14) and D13S1020 (13q34) in 75% of the analysed nuclei.
This cytogenetic profile is in favor of a monosomie 13.
-The study shows a fusion of IGH and MAF in 85% of nuclei equivalent of moleculary translocatio t(14;16)(q32;q23) .
Also, In the hematological carytope it said:
-No clonal abnormalities observed (chromosome) - But that is the exam prior to FISH
PRESENCE OF ONE FACTOR OF PESSIMISTIC PROGNOSTIC DUE TO FUSION OF IGH-MAF
------
Let me know what you all think. But from what i understand there is NO deletion of chromosome 17p13 (is that the p53 or what they call chromosome 13?) and there is NO t(4;14) which from my research appears to be the high risk feature.
The study mentions nothing about 1q21gain. Possibly meaning it was not found.. ?
Also, something about a monosmie (Monosome?) is mentioned. What is this?
And I also ready this which I found here: https://myelomabeacon.org/news/2013/09/13/imwg-risk-stratification-multiple-myeloma/
"Patients who are ISS stage I or II, under the age of 55 years, and whose myeloma cells do not contain t(4;14), del(17p13), or 1q21 gain are classified as low-risk. About 20 percent of patients also are expected to fall in this category at diagnosis, with median overall survival of more than 10 years from diagnosis."
Is this all pretty positive? Are we llooking at a low risk of evolution profile despite the 2 other thinngs found? The conslution says poor prognostic on the study ... I am confused.
I received today the Cytogenetics results (FISH).
Here is the conclusion in French, which i will translate in the hope that some of you may help me shed light on the meaning of all this:
Multibilly, Nancy, please help
--CONCLUSION—
L’hybridation in Situ fluorescente réalisée:
-ne met PAS en évidence de délétion du gène p53 dans 100% des noyaux analysés (200 noyaux analysés)
-met en évidence la perte d’un des 2 locl D13S319 (13q14) et D13S1020 (13q34) dans 75% de noyaux analysés (200 noyaux analysés). Ce profil cytogénétique est en faveur d’une monosomie 13.
-L’hybridation in situ fluorescence réalisée à l’aide de la sonde IGH@/MAF montre une fusion IGH@MAF dans 85% des noyaux analysés équivalent moléculaire de la translocation t(14;16)(q32;q23) (200 noyaux analysés)
Au TOTAL PRESENCE D’UN FACTEUR CYTOGENETIQUE DE PRONOSTIC PEJORATIF (FUSION IGH MAF)
------
Translation:
The study shows:
-No deletion of gene p53 (17p13) in 100% of the analysed nuclei
-Loss of one of the two D13S319 (13q14) and D13S1020 (13q34) in 75% of the analysed nuclei.
This cytogenetic profile is in favor of a monosomie 13.
-The study shows a fusion of IGH and MAF in 85% of nuclei equivalent of moleculary translocatio t(14;16)(q32;q23) .
Also, In the hematological carytope it said:
-No clonal abnormalities observed (chromosome) - But that is the exam prior to FISH
PRESENCE OF ONE FACTOR OF PESSIMISTIC PROGNOSTIC DUE TO FUSION OF IGH-MAF
------
Let me know what you all think. But from what i understand there is NO deletion of chromosome 17p13 (is that the p53 or what they call chromosome 13?) and there is NO t(4;14) which from my research appears to be the high risk feature.
The study mentions nothing about 1q21gain. Possibly meaning it was not found.. ?
Also, something about a monosmie (Monosome?) is mentioned. What is this?
And I also ready this which I found here: https://myelomabeacon.org/news/2013/09/13/imwg-risk-stratification-multiple-myeloma/
"Patients who are ISS stage I or II, under the age of 55 years, and whose myeloma cells do not contain t(4;14), del(17p13), or 1q21 gain are classified as low-risk. About 20 percent of patients also are expected to fall in this category at diagnosis, with median overall survival of more than 10 years from diagnosis."
Is this all pretty positive? Are we llooking at a low risk of evolution profile despite the 2 other thinngs found? The conslution says poor prognostic on the study ... I am confused.
Last edited by Maro on Fri May 16, 2014 12:47 pm, edited 1 time in total.
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Maro - Who do you know with myeloma?: My mom
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 63
Re: Questions from France about smoldering myeloma
Bonjour Maro, Thanks for posting your mother's FISH results. I don't feel well informed enough about chromosomal testing to venture any sort of an opinion though. Are you able to make an appointment with her doctor to go over these results, or at least have a list of questions ready for your next app't? There are probably others on this Forum who could look at the results and better understand them, though..
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Questions from France about smoldering myeloma
Tried calling my onco.. she barely had any time to answer but said no p53 was a good sign.
However what worries me is that I ready everyone that loss of part of D13S319 (13q14) and/or D13S1020 (13q34) is bad prognostic...
I'm struggling to find more information but there so much out there that I am feeling lost.
On one hand the results menton no deletion of 17p13 and on the other they mention a problem on D13S319 (13q14) or D13S1020 (13q34) - which from what I understand are the arms or something...it suggests monosomie 13.
Does anyone know anything about this?
I am still unsure on how to interpret results and the next appointment with onco is in august. Can't wait that long for some info
However what worries me is that I ready everyone that loss of part of D13S319 (13q14) and/or D13S1020 (13q34) is bad prognostic...
I'm struggling to find more information but there so much out there that I am feeling lost.
On one hand the results menton no deletion of 17p13 and on the other they mention a problem on D13S319 (13q14) or D13S1020 (13q34) - which from what I understand are the arms or something...it suggests monosomie 13.
Does anyone know anything about this?
I am still unsure on how to interpret results and the next appointment with onco is in august. Can't wait that long for some info
Last edited by Maro on Fri May 16, 2014 12:48 pm, edited 1 time in total.
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Maro - Who do you know with myeloma?: My mom
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 63
Re: Questions from France about smoldering myeloma
Hi Maro,
Correct me if I'm wrong, but your mother's condition is still classified as smoldering myeloma, correct?
If so, then I think the article you mentioned is not necessarily the one to focus on right now. That article focuses on how chromosomal abnormalities affect the aggressiveness of multiple myeloma, not the risk of smoldering myeloma progressing to multiple myeloma (symptomatic, not smoldering, disease).
I know it may seem like I'm splitting hairs, and there's definitely a connection between the two concepts.
But, assuming that your mother's disease is smoldering myeloma, what you need to understand at this point is the extent to which chromosomal abnormalities affect the risk of your mother's disease progressing to multiple myeloma.
As far as I can recall, these are two of the most recent articles here at the Beacon with information on chromosomal abnormalities and the risk of smoldering myeloma progressing to multiple myeloma:
https://myelomabeacon.org/news/2013/11/06/chromosomal-abnormalities-tumor-load-smoldering-myeloma-progression-risk/
https://myelomabeacon.org/news/2013/03/29/chromosomal-abnormalities-smoldering-myeloma-high-risk-progression/
Also, the most recent Beacon article mentions that there will be several studies presented at the upcoming ASCO medical conference that look at factors that affect the risk of progression in smoldering myeloma patients. You might want to review that article and check out the relevant abstracts.
https://myelomabeacon.org/news/2014/05/15/multiple-myeloma-asco-2014-overview/
Correct me if I'm wrong, but your mother's condition is still classified as smoldering myeloma, correct?
If so, then I think the article you mentioned is not necessarily the one to focus on right now. That article focuses on how chromosomal abnormalities affect the aggressiveness of multiple myeloma, not the risk of smoldering myeloma progressing to multiple myeloma (symptomatic, not smoldering, disease).
I know it may seem like I'm splitting hairs, and there's definitely a connection between the two concepts.
But, assuming that your mother's disease is smoldering myeloma, what you need to understand at this point is the extent to which chromosomal abnormalities affect the risk of your mother's disease progressing to multiple myeloma.
As far as I can recall, these are two of the most recent articles here at the Beacon with information on chromosomal abnormalities and the risk of smoldering myeloma progressing to multiple myeloma:
https://myelomabeacon.org/news/2013/11/06/chromosomal-abnormalities-tumor-load-smoldering-myeloma-progression-risk/
https://myelomabeacon.org/news/2013/03/29/chromosomal-abnormalities-smoldering-myeloma-high-risk-progression/
Also, the most recent Beacon article mentions that there will be several studies presented at the upcoming ASCO medical conference that look at factors that affect the risk of progression in smoldering myeloma patients. You might want to review that article and check out the relevant abstracts.
https://myelomabeacon.org/news/2014/05/15/multiple-myeloma-asco-2014-overview/
Re: Questions from France about smoldering myeloma
Hello Cheryl,
Many thanks for the links you have given me.
Well you are right, she is smoldering. However, there is a link between time to progression (TTP) and cytogenetics even as described by the articles that you have given me.
And when and if the disease evolves, these same cytogenetics will determine how she responds on treatment.
This is why I am trying to understand the results regardless of her current stage even though I am thankful that at the moment we are safe from the symptoms (and hopefully forever..).
After some research it appears that she has no deletion of chromosome 13, 13p17 but there is however a concern regarding the deletion of the long arms of the chromosome 13 called 13q14 or 13q34 in 75% of her analysed plasmocytes.
Unfortunately I am still unsure if this is considered a bad thing or not. Does anyone know ?
I also was hoping someone could enlighten me regarding the t(14;16) translocation found in 85% of her plasmocytes.
Many thanks
Many thanks for the links you have given me.
Well you are right, she is smoldering. However, there is a link between time to progression (TTP) and cytogenetics even as described by the articles that you have given me.
And when and if the disease evolves, these same cytogenetics will determine how she responds on treatment.
This is why I am trying to understand the results regardless of her current stage even though I am thankful that at the moment we are safe from the symptoms (and hopefully forever..).
After some research it appears that she has no deletion of chromosome 13, 13p17 but there is however a concern regarding the deletion of the long arms of the chromosome 13 called 13q14 or 13q34 in 75% of her analysed plasmocytes.
Unfortunately I am still unsure if this is considered a bad thing or not. Does anyone know ?
I also was hoping someone could enlighten me regarding the t(14;16) translocation found in 85% of her plasmocytes.
Many thanks
-
Maro - Who do you know with myeloma?: My mom
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 63
Re: Questions from France about smoldering myeloma
Hello everyone,
Wanted to give a little update regarding my mom.
It has been 3 months since her last blood test and the time has come for the next blood checkup, which was done 2 days ago. We should get the results by Friday.
I'm pretty anxious and nervous about the results, even though I believe there won't be a change.. Do you all feel this way at every blood checkup?
Weird thing is though that the doctor did not ask for the light chain assay. Just a checkup on m spikes and CRA possibilities.
Fingers crossed.
Wishing you all well.
Maro
Wanted to give a little update regarding my mom.
It has been 3 months since her last blood test and the time has come for the next blood checkup, which was done 2 days ago. We should get the results by Friday.
I'm pretty anxious and nervous about the results, even though I believe there won't be a change.. Do you all feel this way at every blood checkup?
Weird thing is though that the doctor did not ask for the light chain assay. Just a checkup on m spikes and CRA possibilities.
Fingers crossed.
Wishing you all well.
Maro
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Maro - Who do you know with myeloma?: My mom
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 63
Re: Questions from France about smoldering myeloma
Thank you, Maro, for the update. We hope your mother's results turn out to be good news. Please let us know how they turn out.
Re: Questions from France about smoldering myeloma
Hello everyone, I really need your feedback. 
We finally received results of the latest lab tests, 3 months after the previous ones in April.
Here is a brief summary of essentials, followed by an important question I would wish someone could englighten us about:
Hemoblogin 117g/l or 11.7g/dL (previous exam was 115 or 11.5g/dL) - improvement
Albumin 39,3g/l (previous exam was 38,6g/l) - improvement
Creatinine 64umol/l (previous exam was 73 - normal range 45-84)
Renal function COCKROFT 70.4ml/mn (previous exam was 61,4 - must be over 60) - Significant improvement
Renal function MDRD 86.3ml/mn (previous exam 74.4, must be over 60) - Significant improvement
Calcium 23mmol/l (previous exam 2.43 - normal range 2.2 - 2.55)
OVERALL IMPROVEMENT IN C.R.A criteria (so still smoldering assuming no bone lesions)
The M Spikes are the BIG question
4 exams were made in 3 different laboratories (because we were sent from one hospital to another and they all had their own lab...this is where it gets tricky, let's call them laboratory A, B and C):
-In February we did a test in lab A : 18.5g/L (1.85g/dL)
-In March we did a test in lab B : 11.6g/L (1.16g/dL)
-In April we did a test in lab C : 22.1g/L (2.21g/dL)
-This July (3 days ago) the final test in lab A, same lab as the first one, which we will be sticking with in the future reveals: 20.5g/L (2.05g/dL)
QUESTION:
How do i interpret the lab test? Should I compare the test done in lab C in April versus the lab test done in July in lab A? In this case there is an IMPROVEMENT (22.1g/L vs 20.5g/L)
OR
Should I compare the test done in February in lab A which showed 18.5g/L vs the final lab A test (same lab) which shows 20.5g/L - PROGRESSION NO IMPROVEMENT
Can lab tests differ so much from one lab to another? Or does the spike just fluctuate up and down?
How do i Interpret these results?
Many thanks
We finally received results of the latest lab tests, 3 months after the previous ones in April.
Here is a brief summary of essentials, followed by an important question I would wish someone could englighten us about:
Hemoblogin 117g/l or 11.7g/dL (previous exam was 115 or 11.5g/dL) - improvement
Albumin 39,3g/l (previous exam was 38,6g/l) - improvement
Creatinine 64umol/l (previous exam was 73 - normal range 45-84)
Renal function COCKROFT 70.4ml/mn (previous exam was 61,4 - must be over 60) - Significant improvement
Renal function MDRD 86.3ml/mn (previous exam 74.4, must be over 60) - Significant improvement
Calcium 23mmol/l (previous exam 2.43 - normal range 2.2 - 2.55)
OVERALL IMPROVEMENT IN C.R.A criteria (so still smoldering assuming no bone lesions)
The M Spikes are the BIG question
4 exams were made in 3 different laboratories (because we were sent from one hospital to another and they all had their own lab...this is where it gets tricky, let's call them laboratory A, B and C):
-In February we did a test in lab A : 18.5g/L (1.85g/dL)
-In March we did a test in lab B : 11.6g/L (1.16g/dL)
-In April we did a test in lab C : 22.1g/L (2.21g/dL)
-This July (3 days ago) the final test in lab A, same lab as the first one, which we will be sticking with in the future reveals: 20.5g/L (2.05g/dL)
QUESTION:
How do i interpret the lab test? Should I compare the test done in lab C in April versus the lab test done in July in lab A? In this case there is an IMPROVEMENT (22.1g/L vs 20.5g/L)
OR
Should I compare the test done in February in lab A which showed 18.5g/L vs the final lab A test (same lab) which shows 20.5g/L - PROGRESSION NO IMPROVEMENT
Can lab tests differ so much from one lab to another? Or does the spike just fluctuate up and down?
How do i Interpret these results?
Many thanks
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Maro - Who do you know with myeloma?: My mom
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 63
Re: Questions from France about smoldering myeloma
Dear Maro
I am happy to see no CRAB criteria and still smoldering. Regarding the M-protein, this is a great example that we cannot compare across labs. The test is run differently in each laboratory and interpreted by a different pathologist. Do not compare across labs.
I would use labs from center A.
Also, the m-proteins can and do fluctate and the difference here is minor. I would not consider it progression or rise.
Continued followup is important.
All the best
I am happy to see no CRAB criteria and still smoldering. Regarding the M-protein, this is a great example that we cannot compare across labs. The test is run differently in each laboratory and interpreted by a different pathologist. Do not compare across labs.
I would use labs from center A.
Also, the m-proteins can and do fluctate and the difference here is minor. I would not consider it progression or rise.
Continued followup is important.
All the best
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Dr. Jatin Shah - Name: Jatin Shah, M.D.
Beacon Medical Advisor
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