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Re: Is the relapse rate for myeloma really 100 percent?
I demand a cure because I was diagnosed at 32, so add 20 years of treatments and I will only be 52. Younger than the age when you were diagnosed and so certainly not long enough to say I've had a long enough life that I don't need to be cured and survival is good enough. I am 37 and status is relapsed, so back on this roller coaster again
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Is the relapse rate for myeloma really 100 percent?
This morning's paper had a story of a SEVEN MONTH OLD dying of cancer.
How is that for perspective.?
We adults have no right "to demand" anything.
Ripe Wemsley cheese or perhaps some overgrown Green Guerrere ....? Right-O !
How is that for perspective.?
We adults have no right "to demand" anything.
Ripe Wemsley cheese or perhaps some overgrown Green Guerrere ....? Right-O !
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Rneb
Re: Is the relapse rate for myeloma really 100 percent?
Great point by JerryB.
"The one question that I could not get a good answer on was when a younger patient like myself comes down with the disease, is it really possible for the body to hold up to 10+ years of treatment? Knowing that the relapse rate is 100%, we'd be going through multiple treatment periods during a 10 year span and just how much of these chemicals can the body take?"
JerryB just expressed my thought as to why I think maintenance therapy increases progression free survival but not overall survival in the majority of studies. There was a recent study that compared quality of life of older cancer survivors. Unfortunately older myeloma patients have poor QOL when compared to other cancer patients. Some of it is likely the nature of the disease, but the therapies are likely contributing to this as well.
"METHODS:
HRQOL was examined with the 36-Item Short Form Health Survey, version 1, and the Veterans RAND 12-Item Health Survey in patients with selected cancers (kidney cancer, bladder cancer, pancreatic cancer, upper gastrointestinal cancer, cancer of the oral cavity and pharynx, uterine cancer, cervical cancer, thyroid cancer, melanoma, chronic leukemia, non-Hodgkin lymphoma, and multiple myeloma) and in individuals without cancer on the basis of data linked from the Surveillance, Epidemiology, and End Results cancer registry system and the Medicare Health Outcomes Survey. Scale scores, Physical Component Summary (PCS) and Mental Component Summary (MCS) scores, and a utility metric (Short Form 6D/Veterans RAND 6D), adjusted for sociodemographic characteristics and other chronic conditions, were calculated. A 3-point difference in the scale scores and a 2-point difference in the PCS and MCS scores were considered to be minimally important differences.
RESULTS:
Data from 16,095 cancer survivors and 1,224,549 individuals without a history of cancer were included. The results indicated noteworthy deficits in physical health status. Mental health was comparable, although scores for the Role-Emotional and Social Functioning scales were worse for patients with most types of cancer versus those without cancer. Survivors of multiple myeloma and pancreatic malignancies reported the lowest scores, with their PCS/MCS scores less than those of individuals without cancer by 3 or more points.
CONCLUSIONS:
HRQOL surveillance efforts revealed poor health outcomes among many older adults and specifically among survivors of multiple myeloma and pancreatic cancer. "
http://www.ncbi.nlm.nih.gov/pubmed/25369293
"The one question that I could not get a good answer on was when a younger patient like myself comes down with the disease, is it really possible for the body to hold up to 10+ years of treatment? Knowing that the relapse rate is 100%, we'd be going through multiple treatment periods during a 10 year span and just how much of these chemicals can the body take?"
JerryB just expressed my thought as to why I think maintenance therapy increases progression free survival but not overall survival in the majority of studies. There was a recent study that compared quality of life of older cancer survivors. Unfortunately older myeloma patients have poor QOL when compared to other cancer patients. Some of it is likely the nature of the disease, but the therapies are likely contributing to this as well.
"METHODS:
HRQOL was examined with the 36-Item Short Form Health Survey, version 1, and the Veterans RAND 12-Item Health Survey in patients with selected cancers (kidney cancer, bladder cancer, pancreatic cancer, upper gastrointestinal cancer, cancer of the oral cavity and pharynx, uterine cancer, cervical cancer, thyroid cancer, melanoma, chronic leukemia, non-Hodgkin lymphoma, and multiple myeloma) and in individuals without cancer on the basis of data linked from the Surveillance, Epidemiology, and End Results cancer registry system and the Medicare Health Outcomes Survey. Scale scores, Physical Component Summary (PCS) and Mental Component Summary (MCS) scores, and a utility metric (Short Form 6D/Veterans RAND 6D), adjusted for sociodemographic characteristics and other chronic conditions, were calculated. A 3-point difference in the scale scores and a 2-point difference in the PCS and MCS scores were considered to be minimally important differences.
RESULTS:
Data from 16,095 cancer survivors and 1,224,549 individuals without a history of cancer were included. The results indicated noteworthy deficits in physical health status. Mental health was comparable, although scores for the Role-Emotional and Social Functioning scales were worse for patients with most types of cancer versus those without cancer. Survivors of multiple myeloma and pancreatic malignancies reported the lowest scores, with their PCS/MCS scores less than those of individuals without cancer by 3 or more points.
CONCLUSIONS:
HRQOL surveillance efforts revealed poor health outcomes among many older adults and specifically among survivors of multiple myeloma and pancreatic cancer. "
http://www.ncbi.nlm.nih.gov/pubmed/25369293
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Mark11
Re: Is the relapse rate for myeloma really 100 percent?
Hi Mark11,
Another interesting link about QOL, inferring that the cancers with the lowest QOLs are multiple myeloma and pancreatic cancer.
I would just like to point out that pancreatic cancer has a very low 5 year survival rate, and apparently is the only cancer with a single-digit one. At least we can say that with myeloma, the 5-year survival rates are increasing, and maybe even quite quickly.
This doesn't relate precisely to QOLs, but at least survival is increasing.
Another interesting link about QOL, inferring that the cancers with the lowest QOLs are multiple myeloma and pancreatic cancer.
I would just like to point out that pancreatic cancer has a very low 5 year survival rate, and apparently is the only cancer with a single-digit one. At least we can say that with myeloma, the 5-year survival rates are increasing, and maybe even quite quickly.
This doesn't relate precisely to QOLs, but at least survival is increasing.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Is the relapse rate for myeloma really 100 percent?
The studies that show overall survival with multiple myeloma lag and are just now picking up the impact of increase in overall survival that is taking place since the advent of the novel agents. There has not been enough time that has passed to know what impact the latest agents Kyprolis and Pomalyst will have. The impact of Velcade and Revlimid are just now being seen. This disease affects patients so individually that generalizations are difficult and for the most part not useful. However, there is no doubt that overall survival is being extended across the board. We are not yet in a position where we can classify the disease as chronic - manageable but that is the direction we are heading. The immune therapy drugs now being developed will give us more ammunition and more ways to attack and control myeloma from mutating.
Another analogy I have used when discussing this with others is AIDS. That disease is not curable and mutates. However; a cocktail of drugs as opposed to using a single agent, has now put it into a chronic category where it is controlled. The cocktail approach and modifications to the cocktail is where myeloma treatment is now the standard and is heading toward management - control.
The big difference in my analogy is that myeloma is not one a single type of cancer, it appears to be many types that loosely share some common characteristics. So getting control over it is much more difficult. AIDS is one disease, not multiple ones, so it responds the same in patients to drug therapy virtually every time. With myeloma, some patients respond well to a certain drug therapy and others do not. So getting this mix right is more individual and trial and error. However, as I said in an earlier post, we are heading in the right direction and are close to putting this disease into the chronic category. Not there yet, even with the standard risk patients but getting closer.
Ron
Another analogy I have used when discussing this with others is AIDS. That disease is not curable and mutates. However; a cocktail of drugs as opposed to using a single agent, has now put it into a chronic category where it is controlled. The cocktail approach and modifications to the cocktail is where myeloma treatment is now the standard and is heading toward management - control.
The big difference in my analogy is that myeloma is not one a single type of cancer, it appears to be many types that loosely share some common characteristics. So getting control over it is much more difficult. AIDS is one disease, not multiple ones, so it responds the same in patients to drug therapy virtually every time. With myeloma, some patients respond well to a certain drug therapy and others do not. So getting this mix right is more individual and trial and error. However, as I said in an earlier post, we are heading in the right direction and are close to putting this disease into the chronic category. Not there yet, even with the standard risk patients but getting closer.
Ron
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Is the relapse rate for myeloma really 100 percent?
That QOL issue is really what haunts me from time to time. My diagnosis pretty much wrecked my life plans, so I'm in college right now trying to attempt to get my degree as fast as possible to accommodate a career change. As lys2012 put it, even if medicine pushes survival to 30 years, I'll be 50. On top of that I have to worry about relapses, potent chemotherapy, and probably another lengthy stay for a SCT while trying to re-establish a career.
Before this diagnosis I was very much a guy with 5 and 10 year plans, goals, and ambitions. Now I'm forced to live day-by-day or else life gets really depressing. I know at least I'll always keep fighting and will hold out for a permanent solution and will just hope that my body isn't too trashed from treatment when that day arrives.
Before this diagnosis I was very much a guy with 5 and 10 year plans, goals, and ambitions. Now I'm forced to live day-by-day or else life gets really depressing. I know at least I'll always keep fighting and will hold out for a permanent solution and will just hope that my body isn't too trashed from treatment when that day arrives.
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Shwan - Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 30, 2012
- Age at diagnosis: 25
Re: Is the relapse rate for myeloma really 100 percent?
The whole issue of QOL and relapse has a lot to do with age. No disrespect to older patients but 10 years is not much for our daughter who was diagnosed at 32. I am 60 and I would be happy to live to 70, although I still consider that young. Younger people are still trying to work, many have children, and struggle to get through the daily tasks of life. It is especially difficult to hold on to the vibrancy of life for anyone.
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TJ13
Re: Is the relapse rate for myeloma really 100 percent?
The results of ASH-San Fran were just released ( ASPIRE study), which appear to confirm the thoughts Ron H, and others (ie. No cure for multiple myeloma, but chronic disease and "control" with QOL--is closer) seems to be a step closer.
Impact on Stem Cell procedures, is yet to be seen. Perhaps only used with High-Risk disease ?
Perspective is important in the long view of this disease.
Good luck.
Impact on Stem Cell procedures, is yet to be seen. Perhaps only used with High-Risk disease ?
Perspective is important in the long view of this disease.
Good luck.
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Rneb
Re: Is the relapse rate for myeloma really 100 percent?
Hi TJ13,
There was a QOL study for myeloma patients that just came out that confirms that myeloma impacts younger patients QOL more than older ones compared to the general population. Do not forget that the typical myeloma patient presents at 70, so the therapies, etc are geared toward those patients. The issues you and Shwan bring up (ie careers) are not issues that are as important to a 70 year old patient.
"The objectives of this study were to compare health-related quality of life (HRQOL) between multiple myeloma (multiple myeloma) patients aged ≤65 and >65 years and to compare this with a normative population. Factors associated with HRQOL were identified. The population-based Eindhoven Cancer Registry was used to select multiple myeloma patients diagnosed from 1999 to 2010. Patients (n = 289) were invited to complete the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30) and Quality of Life Questionnaire Multiple Myeloma Module 20 (QLQ-MY20), and 212 patients responded (73 %). Data from the normative population (n = 568) were used for comparison. multiple myeloma patients >65 years scored better on emotional functioning (p < 0.05) and financial problems (p < 0.01) compared to patients ≤65 years. Patients ≤65 years reported better body image and future perspective (p < 0.01). Compared to the normative population, patients ≤65 years scored worse on all EORTC QLQ-C30 functioning scales and on global health/QOL, fatigue, pain, dyspnea, appetite loss, and financial problems (p < 0.01). Patients >65 years scored worse on social, physical, and role functioning and on global health/QOL, fatigue, pain, and dyspnea (p < 0.01). Younger patients had worse HRQOL compared to the normative population than elderly patients. Patients with comorbidities reported lower QOL. The longer the time since diagnosis, the better the physical functioning. No major differences in HRQOL were found between younger and older multiple myeloma patients. Compared to that of the normative population, HRQOL in younger patients was worse than that in older patients. The number of comorbidities and time since diagnosis were associated with HRQOL. multiple myeloma patients reported that a high symptom burden and therapy should, besides prolonging survival, be aimed at improving HRQOL."
http://www.ncbi.nlm.nih.gov/pubmed/25471174
I have mentioned this before, long term QOL is a reason for younger blood cancer patients to consider early allo transplants with some type of t cell depletion. QOL for long term t cell depleted allo survivors seems quite different than it is in the studies on myeloma patients I posted above.
"Seventy-five (82%) of 92 survivors no longer required systemic immunosuppressive treatment. Four (4.3%) relapsed with leukemia at a median of 8.5 years (range: 6.2-14.0) after HSCT. Four (4.3%) died between 7.4 and 13.4 years post-HSCT (1 relapse, 1 lung cancer, 1 pneumonia, 1 brain hemorrhage). Most survivors beyond 5 years had an excellent performance status with no difference in physical and mental health and higher HRQL scores (P = .02) compared with population norms. Although physical and psychologic symptom distress was low, those with higher symptom distress experienced inferior HRQL. These results show that 5 or more years after T cell-depleted HSCT for hematologic malignancy most individuals survive disease free with an excellent performance status, preserved physical and psychological health, and excellent HRQL."
http://www.ncbi.nlm.nih.gov/pubmed/20302959
Mark
There was a QOL study for myeloma patients that just came out that confirms that myeloma impacts younger patients QOL more than older ones compared to the general population. Do not forget that the typical myeloma patient presents at 70, so the therapies, etc are geared toward those patients. The issues you and Shwan bring up (ie careers) are not issues that are as important to a 70 year old patient.
"The objectives of this study were to compare health-related quality of life (HRQOL) between multiple myeloma (multiple myeloma) patients aged ≤65 and >65 years and to compare this with a normative population. Factors associated with HRQOL were identified. The population-based Eindhoven Cancer Registry was used to select multiple myeloma patients diagnosed from 1999 to 2010. Patients (n = 289) were invited to complete the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30) and Quality of Life Questionnaire Multiple Myeloma Module 20 (QLQ-MY20), and 212 patients responded (73 %). Data from the normative population (n = 568) were used for comparison. multiple myeloma patients >65 years scored better on emotional functioning (p < 0.05) and financial problems (p < 0.01) compared to patients ≤65 years. Patients ≤65 years reported better body image and future perspective (p < 0.01). Compared to the normative population, patients ≤65 years scored worse on all EORTC QLQ-C30 functioning scales and on global health/QOL, fatigue, pain, dyspnea, appetite loss, and financial problems (p < 0.01). Patients >65 years scored worse on social, physical, and role functioning and on global health/QOL, fatigue, pain, and dyspnea (p < 0.01). Younger patients had worse HRQOL compared to the normative population than elderly patients. Patients with comorbidities reported lower QOL. The longer the time since diagnosis, the better the physical functioning. No major differences in HRQOL were found between younger and older multiple myeloma patients. Compared to that of the normative population, HRQOL in younger patients was worse than that in older patients. The number of comorbidities and time since diagnosis were associated with HRQOL. multiple myeloma patients reported that a high symptom burden and therapy should, besides prolonging survival, be aimed at improving HRQOL."
http://www.ncbi.nlm.nih.gov/pubmed/25471174
I have mentioned this before, long term QOL is a reason for younger blood cancer patients to consider early allo transplants with some type of t cell depletion. QOL for long term t cell depleted allo survivors seems quite different than it is in the studies on myeloma patients I posted above.
"Seventy-five (82%) of 92 survivors no longer required systemic immunosuppressive treatment. Four (4.3%) relapsed with leukemia at a median of 8.5 years (range: 6.2-14.0) after HSCT. Four (4.3%) died between 7.4 and 13.4 years post-HSCT (1 relapse, 1 lung cancer, 1 pneumonia, 1 brain hemorrhage). Most survivors beyond 5 years had an excellent performance status with no difference in physical and mental health and higher HRQL scores (P = .02) compared with population norms. Although physical and psychologic symptom distress was low, those with higher symptom distress experienced inferior HRQL. These results show that 5 or more years after T cell-depleted HSCT for hematologic malignancy most individuals survive disease free with an excellent performance status, preserved physical and psychological health, and excellent HRQL."
http://www.ncbi.nlm.nih.gov/pubmed/20302959
Mark
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Mark11
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