It's so confusing when terms don't mean the same thing across the board! My husband's multiple myeloma was not described as aggressive by his oncologist even though Velcade didn't work at all for him. However, now that the cytogenetics test came in, it is being described as very aggressive even though at the moment he is responding well to Revlimid.
I guess that just goes to show that "aggressive" is used pretty subjectively. I wish they would decide on one usage so people know how to take it.
Forums
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mplsterrapin - Name: Ari
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: Fall 2015
- Age at diagnosis: 54
Re: Aggressive vs. refractory, and hemoglobin when in CR
I strongly agree with you, mplsterrapin.
My oncologist characterized my multiple myeloma as being aggressive based on its failure to respond to Revlimid and Velcade.
However, according to cytogenetic and FISH testing, it is "intermediate" risk.
There does not seem to be a standard for using the term "aggressive", which makes the situation confusing and difficult for both patients and caregivers.
Today, listening to NPR, I heard Vice President Biden's statement that there needs to be much more collaboration and sharing of information among cancer researchers and clinicians. My experience as a multiple myeloma patient certainly bears this lack of communication and collaboration out.
My oncologist characterized my multiple myeloma as being aggressive based on its failure to respond to Revlimid and Velcade.
However, according to cytogenetic and FISH testing, it is "intermediate" risk.
There does not seem to be a standard for using the term "aggressive", which makes the situation confusing and difficult for both patients and caregivers.
Today, listening to NPR, I heard Vice President Biden's statement that there needs to be much more collaboration and sharing of information among cancer researchers and clinicians. My experience as a multiple myeloma patient certainly bears this lack of communication and collaboration out.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Aggressive vs. refractory, and hemoglobin when in CR
I think there have been several discussions here in the forum about the difference between "aggressive" and "high-risk" disease. Here is one of them:
"Difference between risk and aggressiveness?" (forum disc. started May 23, 2014)
I believe the general definition of high risk cancer of any kind is well accepted. In diseases where the state of knowledge is in flux, such as multiple myeloma, the precise definition of high risk disease will vary from specialist to specialist and treatment center to treatment center.
"Refractory" means resistant to treatment. It usually is used with regard to a specific treatment -- the disease is "Revlimid-refractory" or "Velcade-refractory", meaning it does not respond any longer to treatment with Revlimid or Velcade, respectively.
"Difference between risk and aggressiveness?" (forum disc. started May 23, 2014)
I believe the general definition of high risk cancer of any kind is well accepted. In diseases where the state of knowledge is in flux, such as multiple myeloma, the precise definition of high risk disease will vary from specialist to specialist and treatment center to treatment center.
"Refractory" means resistant to treatment. It usually is used with regard to a specific treatment -- the disease is "Revlimid-refractory" or "Velcade-refractory", meaning it does not respond any longer to treatment with Revlimid or Velcade, respectively.
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Jonah
Re: Aggressive vs. refractory, and hemoglobin when in CR
Thank you, Jonah.
The explanation concerning the difference between "risk" and "aggressiveness" posted by Beacon staff in the thread you referenced is particularly good.
However, I don't think the terms concerning level of risk, aggressiveness, or refractoryness are being used consistently by all practitioners, especially with respect to their relationship to each other.
For example, my oncologist concluded I had aggressive myeloma based on its being refractory to two treatments. And one would think that an aggressive form of myeloma would be one with a poorer prognosis than a less aggressive form.
But is is certainly possible for a given case of multiple myeloma that is refractory to most treatments to be indolent - to progress slowly.
It would then seem more than a little counterintuitive to call such cases aggressive.
The explanation concerning the difference between "risk" and "aggressiveness" posted by Beacon staff in the thread you referenced is particularly good.
However, I don't think the terms concerning level of risk, aggressiveness, or refractoryness are being used consistently by all practitioners, especially with respect to their relationship to each other.
For example, my oncologist concluded I had aggressive myeloma based on its being refractory to two treatments. And one would think that an aggressive form of myeloma would be one with a poorer prognosis than a less aggressive form.
But is is certainly possible for a given case of multiple myeloma that is refractory to most treatments to be indolent - to progress slowly.
It would then seem more than a little counterintuitive to call such cases aggressive.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Aggressive vs. refractory, and hemoglobin when in CR
Hi MrP,
Perhaps your oncologist called your disease aggressive based on the fact that it is now refractory to two different treatments AND the fact that this happened in a comparatively short time.
Almost all multiple myeloma becomes refractory to multiple treatments at some point. So the speed at which it becomes refractory is a key factor affecting whether someone describes it as aggressive.
For example, if it takes 10 years for someone to become refractory to the first two drugs they're treated with, their disease is not very aggressive.
Perhaps your oncologist called your disease aggressive based on the fact that it is now refractory to two different treatments AND the fact that this happened in a comparatively short time.
Almost all multiple myeloma becomes refractory to multiple treatments at some point. So the speed at which it becomes refractory is a key factor affecting whether someone describes it as aggressive.
For example, if it takes 10 years for someone to become refractory to the first two drugs they're treated with, their disease is not very aggressive.
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Jonah
Re: Aggressive vs. refractory, and hemoglobin when in CR
Excellent point, Jonah.
Except that I became refractory to the first drug in a few months, but never responded at all to the second -- I was refractory from the start.
I like your explanation, but from an intuitive point of view, and on analogy to other diseases, I think "aggressive" should be reserved for multiple myeloma that tends to progress rapidly, despite treatment, any treatment.
So, theoretically, one could have a slowly progressing variant despite its being refractory to all treatments. My heart disease is like that. We know that high cholesterol is correlated to atherosclerotic disease, and yet although I have high cholesterol and a weak response to all cholesterol lowering drugs, my atherosclerosis is progressing very slowly indeed.
Perhaps this is not the case for multiple myeloma. But, to me, it all comes back to a lack of rigor and consistency in using myeloma terminology.
Except that I became refractory to the first drug in a few months, but never responded at all to the second -- I was refractory from the start.
I like your explanation, but from an intuitive point of view, and on analogy to other diseases, I think "aggressive" should be reserved for multiple myeloma that tends to progress rapidly, despite treatment, any treatment.
So, theoretically, one could have a slowly progressing variant despite its being refractory to all treatments. My heart disease is like that. We know that high cholesterol is correlated to atherosclerotic disease, and yet although I have high cholesterol and a weak response to all cholesterol lowering drugs, my atherosclerosis is progressing very slowly indeed.
Perhaps this is not the case for multiple myeloma. But, to me, it all comes back to a lack of rigor and consistency in using myeloma terminology.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
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