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Is the relapse rate for myeloma really 100 percent?
Statistically speaking, is the true relapse rate of multiple myeloma 100%? Everywhere I read that it "always" comes back, but then I also read about long time survivors?
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blair77 - Who do you know with myeloma?: My husband
- When were you/they diagnosed?: April 2013
- Age at diagnosis: 43
Re: Is the relapse rate for myeloma really 100 percent?
I just attended a conference hosted by Mayo and the docs said 100% relapse. Some are in remission for a long time, but the disease is still present. Bottom line: there is no cure.
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JBarnes - Name: Jerry Barnes
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Aug 17, 2012
- Age at diagnosis: 54
Re: Is the relapse rate for myeloma really 100 percent?
Greetings from Seattle,
This is an excellent and difficult question.
To quote an article published in October 2014 in the journal Blood, "Multiple myeloma is widely considered incurable, although some investigators have recently challenged this dogma".
Performing studies looking for patients who are cured of myeloma is very hard to do because researchers must follow how the patients are doing for 10 years at a minimum. If, indeed, some patients are cured of myeloma, they are likely to be classified as "low risk" by metaphase cytogenetics, iFISH and gene expression profiling analysis.
For the present time, it is fair to say that there is not a cure for multiple myeloma based on therapies available in 2014. This is not to say that a cure is impossible, and, without question, a cure for multiple myeloma is a goal we are all striving for. Our understanding of multiple myeloma and how to treat it is moving ahead rapidly. I am very optimistic that we are turning the disease into a chronic ailment and that someday we will find a cure.
This is an excellent and difficult question.
To quote an article published in October 2014 in the journal Blood, "Multiple myeloma is widely considered incurable, although some investigators have recently challenged this dogma".
Performing studies looking for patients who are cured of myeloma is very hard to do because researchers must follow how the patients are doing for 10 years at a minimum. If, indeed, some patients are cured of myeloma, they are likely to be classified as "low risk" by metaphase cytogenetics, iFISH and gene expression profiling analysis.
For the present time, it is fair to say that there is not a cure for multiple myeloma based on therapies available in 2014. This is not to say that a cure is impossible, and, without question, a cure for multiple myeloma is a goal we are all striving for. Our understanding of multiple myeloma and how to treat it is moving ahead rapidly. I am very optimistic that we are turning the disease into a chronic ailment and that someday we will find a cure.
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: Is the relapse rate for myeloma really 100 percent?
Thanks, Dr. Libby, for your answer.
Based on what I've read, your answer seems to be a very good summary of where we are with regard to curing multiple myeloma. I don't mean to imply that I am judging your answer, because you know infinitely more about all of this than I do. Just saying that your answer jibes with what I've read.
However, there's one exception to that, and it comes from the same Blood journal article that you quoted. In the Conclusions section, Dr. Barlogie and his co-authors say, "The data presented here allow us to conclude that CMM (Clinical Multiple Myeloma) has finally joined the 'club' of curable malignancies."
As a patient, your answer "feels" right to me - it seems too early to say multiple myeloma is "curable." But the Barlogie et al conclusion raises a related question in my mind: How will we know when multiple myeloma is curable? Is there a specific set of criteria that has been agreed upon? Or is it all more ad hoc?
Based on what I've read, your answer seems to be a very good summary of where we are with regard to curing multiple myeloma. I don't mean to imply that I am judging your answer, because you know infinitely more about all of this than I do. Just saying that your answer jibes with what I've read.
However, there's one exception to that, and it comes from the same Blood journal article that you quoted. In the Conclusions section, Dr. Barlogie and his co-authors say, "The data presented here allow us to conclude that CMM (Clinical Multiple Myeloma) has finally joined the 'club' of curable malignancies."
As a patient, your answer "feels" right to me - it seems too early to say multiple myeloma is "curable." But the Barlogie et al conclusion raises a related question in my mind: How will we know when multiple myeloma is curable? Is there a specific set of criteria that has been agreed upon? Or is it all more ad hoc?
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Is the relapse rate for myeloma really 100 percent?
Interesting conversation!
I'm not sure where I got this, but I think any disease is deemed curable when a given treatment protocol stops or eliminates the disease, and can be replicated across patients with the same results. Dr. Barlogie et. al. have been able to cure some patients, but I don't think they've been able to replicate the results consistently across patients.
Lyn
I'm not sure where I got this, but I think any disease is deemed curable when a given treatment protocol stops or eliminates the disease, and can be replicated across patients with the same results. Dr. Barlogie et. al. have been able to cure some patients, but I don't think they've been able to replicate the results consistently across patients.
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: Is the relapse rate for myeloma really 100 percent?
Guess it depends on who you ask.
"Raje and Lonial both comment that the diagnosis and treatment practices in multiple myeloma have come a long way in the past decade. Due to advances in the past 10 years, Lonial estimates that around 15-20% of patients are cured of multiple myeloma due to current standard therapies such as lenalidomide, bortezomib, dexamethasone with or without maintenance therapy, and high dose therapy with autologous stem cell transplant."
http://www.onclive.com/insights/myeloma/Imaging-and-Treatment-Advances-in-Multiple-Myeloma
Dr. Lonial's comment is about 3:55 mins in.
"Raje and Lonial both comment that the diagnosis and treatment practices in multiple myeloma have come a long way in the past decade. Due to advances in the past 10 years, Lonial estimates that around 15-20% of patients are cured of multiple myeloma due to current standard therapies such as lenalidomide, bortezomib, dexamethasone with or without maintenance therapy, and high dose therapy with autologous stem cell transplant."
http://www.onclive.com/insights/myeloma/Imaging-and-Treatment-Advances-in-Multiple-Myeloma
Dr. Lonial's comment is about 3:55 mins in.
Re: Is the relapse rate for myeloma really 100 percent?
Knowing that there have been many with myeloma who have entered remission and have had no detectable disease with the current sensitivity of lab testing and yet relapsed many years later, if there was someone out there today at this moment who has been cured of myeloma completely and is myeloma free, how could that be proven or determined?
In the case of myeloma, completely negative tests for the disease do not mean the myeloma is gone. I do not know of any way with the currently available test and their sensitivity. It seems only time, and a lot of time, well tell.
That theoretical person who has been cured may only know it after 20 to 30 years have passed and they have not relapsed yet. But what if they had been on a maintenance therapy part or the whole time and that was so effective they were not actual completely myeloma free and it was keeping a tiny amount of undetectable myeloma from relapsing?
It seems like determining if a cure has been achieved is nearly as hard as finding a cure.
In the case of myeloma, completely negative tests for the disease do not mean the myeloma is gone. I do not know of any way with the currently available test and their sensitivity. It seems only time, and a lot of time, well tell.
That theoretical person who has been cured may only know it after 20 to 30 years have passed and they have not relapsed yet. But what if they had been on a maintenance therapy part or the whole time and that was so effective they were not actual completely myeloma free and it was keeping a tiny amount of undetectable myeloma from relapsing?
It seems like determining if a cure has been achieved is nearly as hard as finding a cure.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Is the relapse rate for myeloma really 100 percent?
Simply re-define the perspective of a concept of "Cure"...
ie. Diagnosed at 54...treated long term with reasonable treatments that allow for a decent quality of life, until 74-80. ( Low-medium risk disease)
I certainly could be coaxed to call that a "cure". Functional restoration of abilities. Realistic. An acceptable trade-off.
The Bus then hitting me at 74, the massive MI, or the Plane crash ...gee, I guess I wouldn't mind so much about the damn myeloma M Spike levels, anymore.
I have already worn diapers in my early youth--I don't want to take the 2nd course at 75-80.
There is an existing corollary : Men are already dying WITH an increasing amount of incurable Prostate disease...rather than DUE to an incurable Prostate Disease.
Normally, Nietzsche Philosophy sucks ( "That which does not kill.....")--but this may well be a proper application.
I think that is what Doc Libby is saying.
Good luck.
ie. Diagnosed at 54...treated long term with reasonable treatments that allow for a decent quality of life, until 74-80. ( Low-medium risk disease)
I certainly could be coaxed to call that a "cure". Functional restoration of abilities. Realistic. An acceptable trade-off.
The Bus then hitting me at 74, the massive MI, or the Plane crash ...gee, I guess I wouldn't mind so much about the damn myeloma M Spike levels, anymore.
I have already worn diapers in my early youth--I don't want to take the 2nd course at 75-80.
There is an existing corollary : Men are already dying WITH an increasing amount of incurable Prostate disease...rather than DUE to an incurable Prostate Disease.
Normally, Nietzsche Philosophy sucks ( "That which does not kill.....")--but this may well be a proper application.
I think that is what Doc Libby is saying.
Good luck.
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Rneb
Re: Is the relapse rate for myeloma really 100 percent?
Rneb,
Long term disease control and dying of something else would certainly be nearly as good a cure. I hope we get there. And, to be realistic, though we often talk about a cure all the time and how it will save us individually, few if any cancers have 100% or near 100% cure rates. The first cure for myeloma, if and when it comes, could easily have a low cure rate, leaving the majority still fighting the disease and the prospect of death.
Long term disease control and dying of something else would certainly be nearly as good a cure. I hope we get there. And, to be realistic, though we often talk about a cure all the time and how it will save us individually, few if any cancers have 100% or near 100% cure rates. The first cure for myeloma, if and when it comes, could easily have a low cure rate, leaving the majority still fighting the disease and the prospect of death.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Is the relapse rate for myeloma really 100 percent?
Hi Mark K,
What is different about what Dr. Lonial is saying compared to what the others are saying? 15-20% is a very low percentage of patients that may not relapse. A patient that uses novel agents and autos is expected to relapse, so that is not considered curative therapy. I think most doctors and patients would agree with Dr. San Miguels' comments in his excellent paper "Can multiple myeloma become a curable disease?".
"The first reports of a myeloma cure concerned patients who underwent allogeneic transplant.6 However, its high transplant-related mortality, the advanced age of patients, and donor limitations restrict this treatment to a small number of patients, and remains an investigative approach.2,6,7 With HDT/ASCT, 3–10% of multiple myeloma patients will remain in complete remission for more than ten years and can be considered “operationally cured”.2,8–10 Unfortunately, this is still a very small fraction of patients and it would need to be increased to 40–50% to be able to talk about multiple myeloma as a potentially curable disease."
http://www.haematologica.org/content/96/9/1246
Mark
What is different about what Dr. Lonial is saying compared to what the others are saying? 15-20% is a very low percentage of patients that may not relapse. A patient that uses novel agents and autos is expected to relapse, so that is not considered curative therapy. I think most doctors and patients would agree with Dr. San Miguels' comments in his excellent paper "Can multiple myeloma become a curable disease?".
"The first reports of a myeloma cure concerned patients who underwent allogeneic transplant.6 However, its high transplant-related mortality, the advanced age of patients, and donor limitations restrict this treatment to a small number of patients, and remains an investigative approach.2,6,7 With HDT/ASCT, 3–10% of multiple myeloma patients will remain in complete remission for more than ten years and can be considered “operationally cured”.2,8–10 Unfortunately, this is still a very small fraction of patients and it would need to be increased to 40–50% to be able to talk about multiple myeloma as a potentially curable disease."
http://www.haematologica.org/content/96/9/1246
Mark
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Mark11
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