Is it possible to be normal risk but very aggressive? Can anyone give me a simple difference? I guess in my head it makes sense to say a high risk myeloma would be more aggressive? Can a myeloma be "more aggressive" because it went so long without being detected?
Thanks!
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Re: Difference between risk and aggressiveness?
As I thought about this question, I realized that I didn't really know what technically constitutes "aggressive multiple myeloma". Is there a clinical definition of what "aggressive multiple myeloma" is? You see the term used in many papers on multiple myeloma, but is the term completely subjective?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Difference between risk and aggressiveness?
I've thought about how aggressive multiple myeloma can be. In my case when I was diagnosed in June 2013, I had an m-spike of 4.1 and an 80% bone marrow involvement. The FISH showed that I had none of the high risk genetics. Also, as far as my doctors could tell, I had no bone or kidney damage.
So do I have an aggressive form of multiple myeloma considering that I had an 80% bone marrow involvement? Also, would I be considered low risk since I had normal risk genetics? Would it only be considered an aggressive form of multiple myeloma if I actually had bone damage or kidney damage?
I asked my doctor how I could have a high m-spike and high bone marrow involvement without having bone or kidney damage and the only thing he could say was that everyone's multiple myeloma acts differently and that sometimes people can have damage with a very low m-spike. I wonder if I might have an aggressive form that was caught early before the damage was done.
I went through 5 cycles of VRD and then an auto transplant and am now in complete remission with 0% bone marrow involvement. It makes me wonder if/when my myeloma comes back, will it be aggressive? Only time will tell I guess.
So do I have an aggressive form of multiple myeloma considering that I had an 80% bone marrow involvement? Also, would I be considered low risk since I had normal risk genetics? Would it only be considered an aggressive form of multiple myeloma if I actually had bone damage or kidney damage?
I asked my doctor how I could have a high m-spike and high bone marrow involvement without having bone or kidney damage and the only thing he could say was that everyone's multiple myeloma acts differently and that sometimes people can have damage with a very low m-spike. I wonder if I might have an aggressive form that was caught early before the damage was done.
I went through 5 cycles of VRD and then an auto transplant and am now in complete remission with 0% bone marrow involvement. It makes me wonder if/when my myeloma comes back, will it be aggressive? Only time will tell I guess.
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DallasGG - Name: Kent
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 6/20/2013
- Age at diagnosis: 56
Re: Difference between risk and aggressiveness?
For what it's worth, here's are our impressions on this issue.
A myeloma patient's disease is considered aggressive it it has proven itself difficult to treat with existing therapies.
You would never call a patient's disease "aggressive", however, unless it's been proven to be difficult to treat. You might say that the disease could be aggressive, or seems likely to be aggressive, before it's ever been treated. But we don't think a myeloma specialist would classify a patient's disease as aggressive immediately at diagnosis, before treatment has started.
The risk classification of patient's disease is sort of the opposite. It's a prediction. In fact, it's a prediction of how aggressive a patient's disease is likely to be. And it's a prediction that's usually made even before a patient has started treatment, based on things like chromosomal abnormalities and other characteristics of the disease.
Someone with high-risk myeloma is more likely to have aggressive disease than someone with low-risk disease. But the patient's disease could turn out not to be aggressive, given the individual nature of myeloma.
So ... risk classification is a forecasting system. Aggressiveness depends on the actual behavior of the disease.
Hope that helps a bit.
A myeloma patient's disease is considered aggressive it it has proven itself difficult to treat with existing therapies.
You would never call a patient's disease "aggressive", however, unless it's been proven to be difficult to treat. You might say that the disease could be aggressive, or seems likely to be aggressive, before it's ever been treated. But we don't think a myeloma specialist would classify a patient's disease as aggressive immediately at diagnosis, before treatment has started.
The risk classification of patient's disease is sort of the opposite. It's a prediction. In fact, it's a prediction of how aggressive a patient's disease is likely to be. And it's a prediction that's usually made even before a patient has started treatment, based on things like chromosomal abnormalities and other characteristics of the disease.
Someone with high-risk myeloma is more likely to have aggressive disease than someone with low-risk disease. But the patient's disease could turn out not to be aggressive, given the individual nature of myeloma.
So ... risk classification is a forecasting system. Aggressiveness depends on the actual behavior of the disease.
Hope that helps a bit.
Re: Difference between risk and aggressiveness?
Thanks BeaconStaff - that was very helpful for me. I was never even quite sure what "high risk" was. I always thought - high risk for what? to die? to die quickly? I always heard of high risk more in terms of getting a disease, so it never made sense that once you get it, now they say you're high risk or low risk.
But your explanation makes sense now.
But your explanation makes sense now.
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RayGunter - Name: Ray Gunter
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept 2011
- Age at diagnosis: 38
Re: Difference between risk and aggressiveness?
Glad to be of help, Ray.
In case you're interested, a "high-risk cancer" in general is a "cancer that is likely to recur (come back), or spread" (this definition is from the U.S. National Cancer Institute.)
With multiple myeloma, this definition doesn't completely apply, since -- unfortunately -- myeloma will recur in most patients at some point.
So, in the case of multiple myeloma, "high-risk" is used to describe cases where relapse is likely to occur more quickly, or the response to available treatments is likely to be less, than "standard risk" or "low-risk" cases of the disease.
In case you're interested, a "high-risk cancer" in general is a "cancer that is likely to recur (come back), or spread" (this definition is from the U.S. National Cancer Institute.)
With multiple myeloma, this definition doesn't completely apply, since -- unfortunately -- myeloma will recur in most patients at some point.
So, in the case of multiple myeloma, "high-risk" is used to describe cases where relapse is likely to occur more quickly, or the response to available treatments is likely to be less, than "standard risk" or "low-risk" cases of the disease.
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