Some people can live 20+ years with Myeloma. I wonder if there has been any studies on 'the characteristics of long-term survivors'?
I did read something about 'a small number of people with lesser aggressive forms of myeloma and good immune systems' who beat the odds. Don't remember where I read that.
RT
Forums
-
RadiantTiger - Name: Radiant Tiger
- Who do you know with myeloma?: Myself, my deceased uncle
- When were you/they diagnosed?: Feb 2015
- Age at diagnosis: 54
Re: Characteristics of long-term survivors?
RT
These might be useful:
https://myelomabeacon.org/news/2010/07/12/study-reveals-common-features-of-long-term-surviving-multiple-myeloma-patients-eha-2010/
http://www.bloodjournal.org/content/122/21/760?sso-checked=true
But the studies are of patients diagnosed before 2000, and a tiny number treated with novel drugs. But it was post stem cell transplants. No surprise that younger patients live longer, because that is what happens generally in the population.
There has been a recent case study of 4 people too, most not on continuous long term drugs and not all having a transplant, who had survived longer.
I think the missing bits not studied might include mental attitude, (stressed or otherwise by their life situation pre- post multiple myeloma) and personal support available at home. I think I read somewhere those with a caregiver do better, but did not read this in a scientific journal.
Complex subject to unravel as it is likely multifactorial and needs to be deciphered in the context of changes in treatment /drug regimes in recent years.
Edna
These might be useful:
https://myelomabeacon.org/news/2010/07/12/study-reveals-common-features-of-long-term-surviving-multiple-myeloma-patients-eha-2010/
http://www.bloodjournal.org/content/122/21/760?sso-checked=true
But the studies are of patients diagnosed before 2000, and a tiny number treated with novel drugs. But it was post stem cell transplants. No surprise that younger patients live longer, because that is what happens generally in the population.
There has been a recent case study of 4 people too, most not on continuous long term drugs and not all having a transplant, who had survived longer.
I think the missing bits not studied might include mental attitude, (stressed or otherwise by their life situation pre- post multiple myeloma) and personal support available at home. I think I read somewhere those with a caregiver do better, but did not read this in a scientific journal.
Complex subject to unravel as it is likely multifactorial and needs to be deciphered in the context of changes in treatment /drug regimes in recent years.
Edna
Re: Characteristics of long-term survivors?
I just had to add a quick story from my mom's general oncologist. He had a patient who had myeloma for 19 years and died at 80 from heart problems. Her doctor said he had "old type chemo" for ten years but he didn't say what kind. And then his levels were low so they took him off everything except Aredia for his last 9-10 years. He said he never transplanted.
Re: Characteristics of long-term survivors?
Almost at 13 years. 2 transplants (2004, 2009), thalidomide/dex/zometa in the beginning. Revlimid from 2008 until a few months ago. Velcade/dex now.
-
allenbonslett - Who do you know with myeloma?: Me
- When were you/they diagnosed?: 12/2003
- Age at diagnosis: 43
Re: Characteristics of long-term survivors?
Great question, RT!
In addition to the points made by the other folks replying, your question touches on the topic of "exceptional responders." What is it about some cancer patients that allow them to respond exceptionally well to a treatment when most others don't? What can we learn from these exceptional responders that will be beneficial to other patients?
This topic is an area of research that is gaining a lot of interest recently. While the articles Edna pointed to are useful in understanding some of the demographics of long-term multiple myeloma survivors, exceptional responder research is geared more toward understanding the molecular differences in people who respond exceptionally well to some treatment.
Here are links to some recent short articles about this approach:
http://www.nature.com/scibx/journal/v7/n12/full/scibx.2014.332.html
http://www.nih.gov/news/health/sep2014/nci-24.htm
https://www.mskcc.org/blog/what-are-exceptional-responders
While none of these articles mentions multiple myeloma specifically, I think there is some on-going research into multiple myeloma exceptional responders because my myeloma specialist mentioned to me that this is a research area that he thinks is interesting and promising.
Mike
In addition to the points made by the other folks replying, your question touches on the topic of "exceptional responders." What is it about some cancer patients that allow them to respond exceptionally well to a treatment when most others don't? What can we learn from these exceptional responders that will be beneficial to other patients?
This topic is an area of research that is gaining a lot of interest recently. While the articles Edna pointed to are useful in understanding some of the demographics of long-term multiple myeloma survivors, exceptional responder research is geared more toward understanding the molecular differences in people who respond exceptionally well to some treatment.
Here are links to some recent short articles about this approach:
http://www.nature.com/scibx/journal/v7/n12/full/scibx.2014.332.html
http://www.nih.gov/news/health/sep2014/nci-24.htm
https://www.mskcc.org/blog/what-are-exceptional-responders
While none of these articles mentions multiple myeloma specifically, I think there is some on-going research into multiple myeloma exceptional responders because my myeloma specialist mentioned to me that this is a research area that he thinks is interesting and promising.
Mike
-
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: Characteristics of long-term survivors?
Mikeb
The articles you have reported of 'exceptional responders' are not long term survivors but people who responded exceptionally to a drug at phase 1 trial which was not yet approved for the disease. That is quite a different science to understanding why one person with the same cytogenetics etc. lives much longer with the same treatment regime as another patient, GEP may provide more clues combined with performance status and co-morbidities at diagnosis of multiple myeloma.
Some people may have tumours that are very sensitive to many actual and potential drugs that are around to treat the tumour. Yet others do not respond to CR or VGPR rapidly or for long with the same set of drugs. That does not necessarily determine length of survival.
The aim of our specialists generally is to hope to treat such that the chosen treatment regime works to a good level quickly to control the disease. I am on second line of treatment after a year following a VGPR (just below CR level), The second treatment line (aggressively relapsing myeloma) seems to worked equally well within the same first two cycles, except this time my FLC's have gone into the normal range. However, my bone marrow has suffered much too.
The myeloma specialist noted that my myeloma is very responsive to treatment (so far). I too am puzzled but glad too. I have 'mixed cytogenetics some of which are thought to affect prognosis negatively. I have not had stem cell transplant. I feel it is impossible to equate fast/ depth of response to treatment with longevity as so many things will come into play.
To clarify, the articles I quoted are about longer term survivors not exceptional responders to drugs, these two are not interchangeable entities necessarily. I wish they were.
Edna
The articles you have reported of 'exceptional responders' are not long term survivors but people who responded exceptionally to a drug at phase 1 trial which was not yet approved for the disease. That is quite a different science to understanding why one person with the same cytogenetics etc. lives much longer with the same treatment regime as another patient, GEP may provide more clues combined with performance status and co-morbidities at diagnosis of multiple myeloma.
Some people may have tumours that are very sensitive to many actual and potential drugs that are around to treat the tumour. Yet others do not respond to CR or VGPR rapidly or for long with the same set of drugs. That does not necessarily determine length of survival.
The aim of our specialists generally is to hope to treat such that the chosen treatment regime works to a good level quickly to control the disease. I am on second line of treatment after a year following a VGPR (just below CR level), The second treatment line (aggressively relapsing myeloma) seems to worked equally well within the same first two cycles, except this time my FLC's have gone into the normal range. However, my bone marrow has suffered much too.
The myeloma specialist noted that my myeloma is very responsive to treatment (so far). I too am puzzled but glad too. I have 'mixed cytogenetics some of which are thought to affect prognosis negatively. I have not had stem cell transplant. I feel it is impossible to equate fast/ depth of response to treatment with longevity as so many things will come into play.
To clarify, the articles I quoted are about longer term survivors not exceptional responders to drugs, these two are not interchangeable entities necessarily. I wish they were.
Edna
Re: Characteristics of long-term survivors?
Hi Edna,
You're right. Long term survival and exceptional responses are not the same thing. I didn't mean to imply that they were, and I apologize if my posting gave that impression. Re-reading it now, I can see how my posting could be interpreted that way.
I do think as researchers learn more about the molecular differences in different patients' tumors (including multiple myeloma cells), that will lead to better, more individualized, therapies that lead to longer survival. And studying exceptional responders is one important area of research to help put the puzzle pieces together. I probably made a few logic leaps that took me too far afield from the original question that was asked in this thread.
Regarding your case, I'm sorry to hear that you have relapsed and that your myeloma is considered aggressive. However, I am glad that you are responding well to the second-line therapy. Keep that up! Best wishes to you.
Mike
You're right. Long term survival and exceptional responses are not the same thing. I didn't mean to imply that they were, and I apologize if my posting gave that impression. Re-reading it now, I can see how my posting could be interpreted that way.
I do think as researchers learn more about the molecular differences in different patients' tumors (including multiple myeloma cells), that will lead to better, more individualized, therapies that lead to longer survival. And studying exceptional responders is one important area of research to help put the puzzle pieces together. I probably made a few logic leaps that took me too far afield from the original question that was asked in this thread.
Regarding your case, I'm sorry to hear that you have relapsed and that your myeloma is considered aggressive. However, I am glad that you are responding well to the second-line therapy. Keep that up! Best wishes to you.
Mike
-
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: Characteristics of long-term survivors?
Hello MIke
The nature of being an exceptional responder is that there is something unique about your biology / DNA/ physiology etc. that others do not appear to have.
For multiple myeloma we may get to treatments / regimes more effectively targeted towards genetic profiles determined through GEP which will benefit those with high risk multiple myeloma, so that these people survive longer than at present.
In terms of all people with multiple myeloma surviving longer, 10 years or more, I feel the science may be far off and lies with understanding how to turn cancer cells off near permanently. This because not long ago 1 in 3 people in the UK were said to develop cancer in their lifetime, now it is 1 in 2 and also there will be increasing numbers living with cancer.
This picture / change to me suggests that the complex environmental, and likely social changes.also, are driving this increase and our lives, even if we have been healthy. We are exposed to much that the previous generations were not, we have more stresses (or are stressed more easily), we live longer in general etc.
There may be an 'Alexander Fleming' who comes up with something that changes the face of cancer as he did for infectious bacterial diseases. Who knows?
The nature of being an exceptional responder is that there is something unique about your biology / DNA/ physiology etc. that others do not appear to have.
For multiple myeloma we may get to treatments / regimes more effectively targeted towards genetic profiles determined through GEP which will benefit those with high risk multiple myeloma, so that these people survive longer than at present.
In terms of all people with multiple myeloma surviving longer, 10 years or more, I feel the science may be far off and lies with understanding how to turn cancer cells off near permanently. This because not long ago 1 in 3 people in the UK were said to develop cancer in their lifetime, now it is 1 in 2 and also there will be increasing numbers living with cancer.
This picture / change to me suggests that the complex environmental, and likely social changes.also, are driving this increase and our lives, even if we have been healthy. We are exposed to much that the previous generations were not, we have more stresses (or are stressed more easily), we live longer in general etc.
There may be an 'Alexander Fleming' who comes up with something that changes the face of cancer as he did for infectious bacterial diseases. Who knows?
Re: Characteristics of long-term survivors?
The 4 person year 2014 study was previously linked by Edna in a different thread if I am not mistaken. Here is the link http://onlinelibrary.wiley.com/doi/10.1002/ccr3.76/full
Interestingly, one of the cases exemplified a highly chemo- and immunomodulation-
sensitive disease. The study further concludes that disease biology
is indeed one of the most important determinants of outcome. Those two are linked in my mind. The way I read this study was that exceptional response could be one of the contributing factors to long term survival but is not necessarily determinative of long term survival. This is a bit like reading tea leaves though. As others have pointed out, it is extremely difficult to develop an exact science as to why some people are surviving longer than 10 years and others do not. In the interim, it is safe to assume that trying to live as healthy as possible adds to your specific probability of making it to 10 and over. Good luck.
Interestingly, one of the cases exemplified a highly chemo- and immunomodulation-
sensitive disease. The study further concludes that disease biology
is indeed one of the most important determinants of outcome. Those two are linked in my mind. The way I read this study was that exceptional response could be one of the contributing factors to long term survival but is not necessarily determinative of long term survival. This is a bit like reading tea leaves though. As others have pointed out, it is extremely difficult to develop an exact science as to why some people are surviving longer than 10 years and others do not. In the interim, it is safe to assume that trying to live as healthy as possible adds to your specific probability of making it to 10 and over. Good luck.
-
ivanm - Name: Ivan Mitev
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August, 2011
- Age at diagnosis: 37
Re: Characteristics of long-term survivors?
Here is a study discussing the contributions of the immune system in long term myeloma survivors.
C Bryant et al, "Long-term survival in multiple myeloma is associated with a distinct immunological profile, which includes proliferative cytotoxic T-cell clones and a favourable Treg/Th17 balance," Blood Cancer Journal, Sep 2013 (full text of article)
Abstract
Despite improved outcomes in multiple myeloma (multiple myeloma), a cure remains elusive. However, even before the current therapeutic era, 5% of patients survived >10 years and we propose that immune factors contribute to this longer survival. We identified patients attending our clinic, who had survived >10 years (n=20) and analysed their blood for the presence of T-cell clones, T-regulatory cells (Tregs) and T helper 17 (Th17) cells. These results were compared with multiple myeloma patients with shorter follow-up and age-matched healthy control donors. The frequency of cytotoxic T-cell clonal expansions in patients with <10 years follow-up (multiple myeloma patients) was 54% (n=144), whereas it was 100% (n=19/19) in the long-survivors (LTS-MM). T-cell clones from multiple myeloma patients proliferated poorly in vitro, whereas those from LTS-MM patients proliferated readily (median proliferations 6.1% and 61.5%, respectively (P<0.0001)). In addition, we found significantly higher Th17 cells and lower Tregs in the LTS-MM group when compared with the multiple myeloma group. These results indicate that long-term survival in multiple myeloma is associated with a distinct immunological profile, which is consistent with decreased immune suppression.
Introduction
Before the introduction of immunomodulatory agents and proteasome inhibitors, less than 5% of patients with multiple myeloma (MM) survived for longer than 10 years. Attempts to identify factors associated with prolonged survival, arbitrarily set at 10 years, suggested younger age, lower tumour mass and response to therapy. The ability to achieve disease control with allogeneic transplantation and donor lymphocyte infusions indicates the potential for immune-mediated control in patients with MM. There is also indirect evidence of host anti-tumour immune activity through the identification of premalignancy-specific effector T cells in patients with monoclonal gammopathy, the phenomenon of ‘plateau phase' where despite a significant residual tumour burden the disease does not progress8 and the association between the presence of expanded T-cell clones and an improved survival. We hypothesised that patients with myeloma who are long-term survivors (LTS-MM) have greater immunocompetence and that a study of immune biomarkers in these LTS-MM patients might provide a novel approach to understanding the mechanisms of immune dysfunction in MM."
Here are a couple of Beacon articles on the subject as well.
"Immune Function Linked To Long-Term Survival In Multiple Myeloma," The Myeloma Beacon, Oct 11, 2013
"Research Sheds Light On The Immune System Of Multiple Myeloma Patients With Long-Term Disease Control," The Myeloma Beacon, Aug 30, 2012
As a high risk patient with over 4.5 years and counting of drug free remission thanks to my donors immune system I know the value of a healthy functioning immune system for a blood cancer patient!
C Bryant et al, "Long-term survival in multiple myeloma is associated with a distinct immunological profile, which includes proliferative cytotoxic T-cell clones and a favourable Treg/Th17 balance," Blood Cancer Journal, Sep 2013 (full text of article)
Abstract
Despite improved outcomes in multiple myeloma (multiple myeloma), a cure remains elusive. However, even before the current therapeutic era, 5% of patients survived >10 years and we propose that immune factors contribute to this longer survival. We identified patients attending our clinic, who had survived >10 years (n=20) and analysed their blood for the presence of T-cell clones, T-regulatory cells (Tregs) and T helper 17 (Th17) cells. These results were compared with multiple myeloma patients with shorter follow-up and age-matched healthy control donors. The frequency of cytotoxic T-cell clonal expansions in patients with <10 years follow-up (multiple myeloma patients) was 54% (n=144), whereas it was 100% (n=19/19) in the long-survivors (LTS-MM). T-cell clones from multiple myeloma patients proliferated poorly in vitro, whereas those from LTS-MM patients proliferated readily (median proliferations 6.1% and 61.5%, respectively (P<0.0001)). In addition, we found significantly higher Th17 cells and lower Tregs in the LTS-MM group when compared with the multiple myeloma group. These results indicate that long-term survival in multiple myeloma is associated with a distinct immunological profile, which is consistent with decreased immune suppression.
Introduction
Before the introduction of immunomodulatory agents and proteasome inhibitors, less than 5% of patients with multiple myeloma (MM) survived for longer than 10 years. Attempts to identify factors associated with prolonged survival, arbitrarily set at 10 years, suggested younger age, lower tumour mass and response to therapy. The ability to achieve disease control with allogeneic transplantation and donor lymphocyte infusions indicates the potential for immune-mediated control in patients with MM. There is also indirect evidence of host anti-tumour immune activity through the identification of premalignancy-specific effector T cells in patients with monoclonal gammopathy, the phenomenon of ‘plateau phase' where despite a significant residual tumour burden the disease does not progress8 and the association between the presence of expanded T-cell clones and an improved survival. We hypothesised that patients with myeloma who are long-term survivors (LTS-MM) have greater immunocompetence and that a study of immune biomarkers in these LTS-MM patients might provide a novel approach to understanding the mechanisms of immune dysfunction in MM."
Here are a couple of Beacon articles on the subject as well.
"Immune Function Linked To Long-Term Survival In Multiple Myeloma," The Myeloma Beacon, Oct 11, 2013
"Research Sheds Light On The Immune System Of Multiple Myeloma Patients With Long-Term Disease Control," The Myeloma Beacon, Aug 30, 2012
As a high risk patient with over 4.5 years and counting of drug free remission thanks to my donors immune system I know the value of a healthy functioning immune system for a blood cancer patient!
-
Mark11
18 posts
• Page 1 of 2 • 1, 2