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Myeloma regression
I was diagnosed with MGUS in 2010 and with myeloma (asymptomatic) in March of this year. Are there any studies which show that asymptomatic myeloma ever regresses back to MGUS? I have done quite a bit of internet searching and have not found any evidence of this occurring.
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RogerAN - Name: RogerAN
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: March 2013
- Age at diagnosis: 70
Re: Myeloma regression
Hi Roger, that would be awesome if it happened. I have only heard of such a thing happening with active myeloma which reverts to an MGUS-like state after therapy. This MGUS-like state basically continues for years and years without progression. it would be great to find out why some patients get this lucky break.
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: Myeloma regression
"Hi Roger, that would be awesome if it happened."
Good morning Terry. Yes, it would be wonderful, but I also have to be realistic about my condition. I was just curious as to whether there are documented cases of myeloma reverting to MGUS. Take care!
Good morning Terry. Yes, it would be wonderful, but I also have to be realistic about my condition. I was just curious as to whether there are documented cases of myeloma reverting to MGUS. Take care!
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RogerAN - Name: RogerAN
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: March 2013
- Age at diagnosis: 70
Re: Myeloma regression
(1) Actually, I just saw a new abstract, reproduced below, which reports a biomarker in newly diagnosed multiple myeloma patients that is an occult MGUS-like signature predicting long term survival: about 60 percent at 10 years - even in patients that do not achieve a CR.
(2) That said, it may seem like an empty statement -- it is not -- but survival predicts long term survival. Berenson now has a mean survival of 14 years -- looking BACK in time, but it is important to note that his average patient is generally someone like me: a patient who is relatively healthy upon diagnosis, responds well to initial treatment, and then goes to Berenson some time later as he or she contemplates a less agressive long term approach.
(3) But to be balanced, my primary oncologist in SD points out that patients with highly agressive disease or poor health are not typically part of the Berenson population and never make it to this point or have the good fortune of having such a choice. I think that is a fair assessment. This disease is so diverse... That said, I like Berenson and his approach and great results - and will see him three or four times a year.
Good luck to everyone.
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Leukemia. 2013 Jun 7. doi: 10.1038/leu.2013.166. [Epub ahead of print]
A multiparameter flow cytometry immunophenotypic algorithm for the identification of newly-diagnosed symptomatic myeloma with an MGUS-like signature and long-term disease control.
Paiva B, Vídriales MB, Rosiñol L, Martínez-López J, Mateos MV, Ocio EM, Montalbán MA, Cordón L, Gutiérrez NC, Corchete L, Oriol A, Terol MJ, Echeveste MA, De Paz R, De Arriba F, Palomera L, de la Rubia J, Díaz-Mediavilla J, Granell M, Gorosquieta A, Alegre A, Orfao A, Lahuerta JJ, Bladé J, San Miguel JF.
Source1] Hospital Universitariode Salamanca, Salamanca, Spain [2] IBSAL, IBMCC (USAL-CSIC), Salamanca, Spain.
Abstract
Achieving complete remission (CR) in multiple myeloma (multiple myeloma) translates into extended survival but two subgroups of patients fall outside this paradigm: cases with unsustained CR, and patients that do not achieve CR but return into an MGUS-like status with long-term survival. Here, we describe a novel automated flow cytometric classification focused on the analysis of the plasma-cell compartment to identify among newly-diagnosed symptomatic multiple myeloma patients (N=698), cases with a baseline MGUS-like profile, by comparing them to MGUS (N=497) patients and validating the classification model in 114 smoldering multiple myeloma patients. Overall, 59 symptomatic multiple myeloma patients (8%) showed an MGUS-like profile. Despite achieving similar CR rates after HDT/ASCT versus other multiple myeloma patients, MGUS-like cases had unprecedented longer time-to-progression (TTP) and overall survival (~60% at 10-years; P<0.001). Importantly, MGUS-like multiple myeloma patients failing to achieve CR showed similar TTP (P=0.81) and OS (P=0.24) versus cases attaining CR. This automated classification also identified MGUS patients with shorter TTP (P=0.001, HR:5.53) and ultra-high-risk smoldering multiple myeloma (median TTP, 15 months). In summary, we have developed a biomarker that identifies a subset of symptomatic multiple myeloma patients with an occult MGUS-like signature and an excellent outcome, independently of the depth of response.Leukemia accepted article preview online, 7 June 2013; doi:10.1038/leu.2013.166.
(2) That said, it may seem like an empty statement -- it is not -- but survival predicts long term survival. Berenson now has a mean survival of 14 years -- looking BACK in time, but it is important to note that his average patient is generally someone like me: a patient who is relatively healthy upon diagnosis, responds well to initial treatment, and then goes to Berenson some time later as he or she contemplates a less agressive long term approach.
(3) But to be balanced, my primary oncologist in SD points out that patients with highly agressive disease or poor health are not typically part of the Berenson population and never make it to this point or have the good fortune of having such a choice. I think that is a fair assessment. This disease is so diverse... That said, I like Berenson and his approach and great results - and will see him three or four times a year.
Good luck to everyone.
-------------------------------------------------------------------------------------------------------------------
Leukemia. 2013 Jun 7. doi: 10.1038/leu.2013.166. [Epub ahead of print]
A multiparameter flow cytometry immunophenotypic algorithm for the identification of newly-diagnosed symptomatic myeloma with an MGUS-like signature and long-term disease control.
Paiva B, Vídriales MB, Rosiñol L, Martínez-López J, Mateos MV, Ocio EM, Montalbán MA, Cordón L, Gutiérrez NC, Corchete L, Oriol A, Terol MJ, Echeveste MA, De Paz R, De Arriba F, Palomera L, de la Rubia J, Díaz-Mediavilla J, Granell M, Gorosquieta A, Alegre A, Orfao A, Lahuerta JJ, Bladé J, San Miguel JF.
Source1] Hospital Universitariode Salamanca, Salamanca, Spain [2] IBSAL, IBMCC (USAL-CSIC), Salamanca, Spain.
Abstract
Achieving complete remission (CR) in multiple myeloma (multiple myeloma) translates into extended survival but two subgroups of patients fall outside this paradigm: cases with unsustained CR, and patients that do not achieve CR but return into an MGUS-like status with long-term survival. Here, we describe a novel automated flow cytometric classification focused on the analysis of the plasma-cell compartment to identify among newly-diagnosed symptomatic multiple myeloma patients (N=698), cases with a baseline MGUS-like profile, by comparing them to MGUS (N=497) patients and validating the classification model in 114 smoldering multiple myeloma patients. Overall, 59 symptomatic multiple myeloma patients (8%) showed an MGUS-like profile. Despite achieving similar CR rates after HDT/ASCT versus other multiple myeloma patients, MGUS-like cases had unprecedented longer time-to-progression (TTP) and overall survival (~60% at 10-years; P<0.001). Importantly, MGUS-like multiple myeloma patients failing to achieve CR showed similar TTP (P=0.81) and OS (P=0.24) versus cases attaining CR. This automated classification also identified MGUS patients with shorter TTP (P=0.001, HR:5.53) and ultra-high-risk smoldering multiple myeloma (median TTP, 15 months). In summary, we have developed a biomarker that identifies a subset of symptomatic multiple myeloma patients with an occult MGUS-like signature and an excellent outcome, independently of the depth of response.Leukemia accepted article preview online, 7 June 2013; doi:10.1038/leu.2013.166.
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Dan D
Re: Myeloma regression
Roger: What does asymptomatic myeloma mean? I thought that a diagnosis of myeloma istelf requires presentation of one the CRAB criteria. Are you actually referring to smoldering myeloma?
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DM Walking
Re: Myeloma regression
Hi Dan D. Thanks for posting this. Were there any specific details as to what the MGUS-like signature is? or what the biomarker is when they used the multiparameter flow cytometry immunophenotypic algorithm? This would be very good info to know indeed.
many thanks
Dana
many thanks
Dana
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DanaH - Who do you know with myeloma?: Myself, SMM as of 1/2012
- When were you/they diagnosed?: 1/2012
- Age at diagnosis: 54
Re: Myeloma regression
Hi Dana
All I have is the abstract, which does not reveal cytometric profile corresponding to the MGUS signature. I do find provocative, however, the observation that "59 symptomatic multiple myeloma patients (8%) showed an MGUS-like profile" and unprecedented longer time to progression and overall survival.
All I have is the abstract, which does not reveal cytometric profile corresponding to the MGUS signature. I do find provocative, however, the observation that "59 symptomatic multiple myeloma patients (8%) showed an MGUS-like profile" and unprecedented longer time to progression and overall survival.
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Dan D
Re: Myeloma regression
DM Walking wrote:
"Roger: What does asymptomatic myeloma mean? I thought that a diagnosis of myeloma istelf requires presentation of one the CRAB criteria. Are you actually referring to smoldering myeloma?
Hi, DM Walking:
Actually, my hematologist/oncologist told me that because of the results of both my blood tests and my bone marrow biopsy, by definition I had myeloma, however, since I am not, as of yet, showing symptoms other than fatigue, my case is referred to as "asymptomatic" or "smoldering." Those terms are interchangeable. I did have hypercalcaemia at one time--that was the reason I was referred to my current hematologist/oncologist initially, but recent blood tests have shown a normal calcium level. I have also had a hemoglobin count as low as 8.4, but iron infusions brought my red count back to "near normal." So, I await my next blood tests in early July.
"Roger: What does asymptomatic myeloma mean? I thought that a diagnosis of myeloma istelf requires presentation of one the CRAB criteria. Are you actually referring to smoldering myeloma?
Hi, DM Walking:
Actually, my hematologist/oncologist told me that because of the results of both my blood tests and my bone marrow biopsy, by definition I had myeloma, however, since I am not, as of yet, showing symptoms other than fatigue, my case is referred to as "asymptomatic" or "smoldering." Those terms are interchangeable. I did have hypercalcaemia at one time--that was the reason I was referred to my current hematologist/oncologist initially, but recent blood tests have shown a normal calcium level. I have also had a hemoglobin count as low as 8.4, but iron infusions brought my red count back to "near normal." So, I await my next blood tests in early July.
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RogerAN - Name: RogerAN
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: March 2013
- Age at diagnosis: 70
Re: Myeloma regression
Hi, Dan D:
Thanks so much for taking the time to research my question and post the reply. I'm not sure that I totally understand the article completely, but I am going to study it further. Ever learning...
Thanks so much for taking the time to research my question and post the reply. I'm not sure that I totally understand the article completely, but I am going to study it further. Ever learning...
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RogerAN - Name: RogerAN
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: March 2013
- Age at diagnosis: 70
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