mt MIL was diagnosed 2 months ago. since then she had renal failure and came back strong.
started chemo and was told she was having. above marrow transplant in January. last week doctor told her he was pushing back transplant because she is not yet where he wants her to be and has added a very strong medication. yesterday she went to hospital and has a fractured vertebrae.
my husband thinks this shows the progression of cancer. we do not know a stage. are there stages in multiple myeloma.
I'm starting to get scared and need more info on this.
thank you
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Re: staging
I am sorry that therapy is not going quite as planned. Complications can arise - some myeloma related and others related to therapy. If I am reading the status of the disease correctly, the renal failure occurred while on therapy, as did the new fractures.
This would suggest that intial therapy was not controlling disease adequately. Alternatively, In some cases the myeloma progresses prior to the initiation of therapy and we see issues such as this. Myeloma patients can also have fracture in the face of controlled disease due to weakness in vertbral bodies resulting from the myeloma that is now under control. Without more details/specifics it is hard to state more.
The answer; however, is that there likely needs to be a therapeutic change as discussed by your oncologist.
Regarding staging: myeloma staging is not like solid tumors. Myeloma has two staging systems -- one that is prognostic (how well are you going to do), the International Staging System, and one that is more a measure of disease burden (how much disease do you have or how badly is it affecting a patients organ systems), the Durie-Salmon Stage. Neither are perfect and represent guides. Every patient is unique. Each is established at initial presentation of active multiple myeloma.
ISS- is based soley on the levels of albumin and beta 2-microglobulin. It is divided into Stages I, II, & III. I = beta 2 <3.5 and albumin >3.5, III= beta 2 > 5.5, II= neither I or III. Prognosis decreases from Stage I to III.
Durie-Salmon staging is more complicated, based on the amount of paraprotein (M-spike in the serum or urine), degree of anemia, degree of hypercalcemia, degree of lytic disease (bone lesions/destruction), and renal failure. It is also scored I, II, & III and also with an A (= Creatinine <2.0) or B (Creatinine >2.0). IIIB being the "highest."
Further involved in prognosis is a patient risk stratification which in part is based on the presence or absence of know genetic anomalies in myeloma. These are measured by metaphase cytogenetics and FISH (fluoresence in situ hybridization) on the bone marrow cells. More recently a molecular test has begun to be integrated into risk stratification, called MYPRS, that accounts for the expression of 70 genes.
I hope that this helps to a degree and we wish you and your family the best of luck. Ideally, the myeloma will be better controlled by the next line of therapy and management will continue as such.
This would suggest that intial therapy was not controlling disease adequately. Alternatively, In some cases the myeloma progresses prior to the initiation of therapy and we see issues such as this. Myeloma patients can also have fracture in the face of controlled disease due to weakness in vertbral bodies resulting from the myeloma that is now under control. Without more details/specifics it is hard to state more.
The answer; however, is that there likely needs to be a therapeutic change as discussed by your oncologist.
Regarding staging: myeloma staging is not like solid tumors. Myeloma has two staging systems -- one that is prognostic (how well are you going to do), the International Staging System, and one that is more a measure of disease burden (how much disease do you have or how badly is it affecting a patients organ systems), the Durie-Salmon Stage. Neither are perfect and represent guides. Every patient is unique. Each is established at initial presentation of active multiple myeloma.
ISS- is based soley on the levels of albumin and beta 2-microglobulin. It is divided into Stages I, II, & III. I = beta 2 <3.5 and albumin >3.5, III= beta 2 > 5.5, II= neither I or III. Prognosis decreases from Stage I to III.
Durie-Salmon staging is more complicated, based on the amount of paraprotein (M-spike in the serum or urine), degree of anemia, degree of hypercalcemia, degree of lytic disease (bone lesions/destruction), and renal failure. It is also scored I, II, & III and also with an A (= Creatinine <2.0) or B (Creatinine >2.0). IIIB being the "highest."
Further involved in prognosis is a patient risk stratification which in part is based on the presence or absence of know genetic anomalies in myeloma. These are measured by metaphase cytogenetics and FISH (fluoresence in situ hybridization) on the bone marrow cells. More recently a molecular test has begun to be integrated into risk stratification, called MYPRS, that accounts for the expression of 70 genes.
I hope that this helps to a degree and we wish you and your family the best of luck. Ideally, the myeloma will be better controlled by the next line of therapy and management will continue as such.
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
Re: staging
Dr Shain,
I hope that you had a wonderful thanksgiving with lots to feel blessed and grateful for.
Your post trigged a few queries in my mind, given how you categorized the staging systems as more or less, prognostic vs. diagnostic.
Based on your clinical staging experience, and the difference between ISS (prognostic) vs DurieSalmon(disease burden) ...do you see myeloma patients with high disease burden (stageIII) based on DS and great prognosis (stage I) based on ISS...is that common?
If you were to generalize, would you say that, clinically can disease burden be independent of prognosis based on ISS?
Can a patient have a high disease burden and a great prognosis?
Can a patient have a low disease burden and a poor prognosis?
How do you put in clinical perspective variance between the 2 staging systems and how that guides you when it comes to therapeutic recommendations?
In my case, I had Stage III DS (lytic lesions) and Stage I for ISS..and was wondering what the incidence for that was, independent of the cytogenetic profiles we are learning more about. How often do you see that profile?
What is that likelihood, in terms of your clinical experience?
Just wondering how to put in context Stage III DS with Stage I, ISS.
I hope that you had a wonderful thanksgiving with lots to feel blessed and grateful for.
Your post trigged a few queries in my mind, given how you categorized the staging systems as more or less, prognostic vs. diagnostic.
Based on your clinical staging experience, and the difference between ISS (prognostic) vs DurieSalmon(disease burden) ...do you see myeloma patients with high disease burden (stageIII) based on DS and great prognosis (stage I) based on ISS...is that common?
If you were to generalize, would you say that, clinically can disease burden be independent of prognosis based on ISS?
Can a patient have a high disease burden and a great prognosis?
Can a patient have a low disease burden and a poor prognosis?
How do you put in clinical perspective variance between the 2 staging systems and how that guides you when it comes to therapeutic recommendations?
In my case, I had Stage III DS (lytic lesions) and Stage I for ISS..and was wondering what the incidence for that was, independent of the cytogenetic profiles we are learning more about. How often do you see that profile?
What is that likelihood, in terms of your clinical experience?
Just wondering how to put in context Stage III DS with Stage I, ISS.
-
suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: staging
There are number of factors that go into the ultimate prognosis and outcome of any given patient. I listed three of the components that contribute to outcome identified at dignosis: disease burden/degree of organ involvement (DS stage), prognosis (ISS), and genetic risk (cytogenetics and FISH+). These are the basis of how we make decisions for therapy. The Durie Salmon was used up until about 2005 and has since been replaced by the the ISS because of the increased prognostic ability of the ISS and also its symplicity. There is much less room for physician differences wiith two variables (beta 2 M and albumin) as is with DS staging - especially in the context of bone disase. Thus providing a bit more consistency across studies as well.
But there are many other "risk" factors that will portend better or worse outcomes. Age, tolerance to therapy, LDH, CRP, renal failure, imaging positive disease (and response), just to name a few. Some of these are identified at diagnosis. Some evolve with therapy including tolerance of drug and side effects, response to therapy (CR vs VGPR etc), time to relapse (refractory disease), clonal evolution at relapse etc...
I believe that genetic risk tells us a lot about outcomes. especially in cases of del17p. As you may know/understand these staging systems and risk criteria are guides for us to categorize our patients and give them the best information we can about their disase and what to expect. But as you and anyone with or who cares for someone with myeloma or, for that matter, those who treat myeloma, can attest, they are not perfect. I have patients who are DSI, ISSI and standard who end up being primary refractory to therapy -- high risk by definition. But it is only with therapy that we know and this tells us that these systems are not perfect. However, they are generally quite good.
In your case specifically, ISS I would "trump" the DSS IIIA (depending on the extent of your bone disease and complications thereof). But as I said part of this will also involve your risk stratification based on genetic risk (cytogenetics, FISH +/- MYPRS or like gene expression profile). Your response to therapy and tolerance to therapy also play a role. I am not saying that the DS III is not playing a role, it is characterizing the extent of your organ damage.
However, you are now in the waiting time -- living with myeloma and time will tell us how well you really do. As always best of luck.
But there are many other "risk" factors that will portend better or worse outcomes. Age, tolerance to therapy, LDH, CRP, renal failure, imaging positive disease (and response), just to name a few. Some of these are identified at diagnosis. Some evolve with therapy including tolerance of drug and side effects, response to therapy (CR vs VGPR etc), time to relapse (refractory disease), clonal evolution at relapse etc...
I believe that genetic risk tells us a lot about outcomes. especially in cases of del17p. As you may know/understand these staging systems and risk criteria are guides for us to categorize our patients and give them the best information we can about their disase and what to expect. But as you and anyone with or who cares for someone with myeloma or, for that matter, those who treat myeloma, can attest, they are not perfect. I have patients who are DSI, ISSI and standard who end up being primary refractory to therapy -- high risk by definition. But it is only with therapy that we know and this tells us that these systems are not perfect. However, they are generally quite good.
In your case specifically, ISS I would "trump" the DSS IIIA (depending on the extent of your bone disease and complications thereof). But as I said part of this will also involve your risk stratification based on genetic risk (cytogenetics, FISH +/- MYPRS or like gene expression profile). Your response to therapy and tolerance to therapy also play a role. I am not saying that the DS III is not playing a role, it is characterizing the extent of your organ damage.
However, you are now in the waiting time -- living with myeloma and time will tell us how well you really do. As always best of luck.
-
Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
Re: staging
Dr Shain.
In the ISS is the beta 2-microglobulin to prefer when it is less than 3,5. I´m living in Scandinavia with my multiple myeloma and here is the beta 2-microglobulin measured in " nmol/l" and the normal amount is 50-190. Is there a factor to convert the ISS 3,5 into nmol/l ? My 267 nmol/l 2 months ago makes me a little worried.
Thank you for a good explanation!
In the ISS is the beta 2-microglobulin to prefer when it is less than 3,5. I´m living in Scandinavia with my multiple myeloma and here is the beta 2-microglobulin measured in " nmol/l" and the normal amount is 50-190. Is there a factor to convert the ISS 3,5 into nmol/l ? My 267 nmol/l 2 months ago makes me a little worried.
Thank you for a good explanation!
-
SorenDK
Re: staging
This is an interesting question and one that I have not thought about in the past. Interestingly, all of the publications I have looked through to answer the question (europea journals as well as US) simply have mg/l - and no nmol/l equivolent noted.
From what I have read (if you trust google) that conversions are 3.5mg/L = 296nmol/l and 5.5mg/l = 466nmol/l.
As such, your beta 2 would remain less than 3.5.
Also to make a point about the beta2 as a marker- as your results demonstrate 3.5 mg/l is above the "normal range" of normal.
From what I have read (if you trust google) that conversions are 3.5mg/L = 296nmol/l and 5.5mg/l = 466nmol/l.
As such, your beta 2 would remain less than 3.5.
Also to make a point about the beta2 as a marker- as your results demonstrate 3.5 mg/l is above the "normal range" of normal.
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
Re: staging
Dr Shain,
thank you for your answer, I can see there is a factor of 84,5 for conversion, which place me in stage 1, a stone fell from my heart! My albumin is 45 g/l and Wikip. tells (I believe in most Wikip.!) that ISS measures albumin in g/dl, so all is well.
Merry X-mas to you and the readers.
thank you for your answer, I can see there is a factor of 84,5 for conversion, which place me in stage 1, a stone fell from my heart! My albumin is 45 g/l and Wikip. tells (I believe in most Wikip.!) that ISS measures albumin in g/dl, so all is well.
Merry X-mas to you and the readers.
-
SorenDK
7 posts
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