Not sure if this is a good thing or I am just somewhat perplexed. Ever since my mom has been diagnosed, everyone that I talk to who knows a neighbor, relative, etc. with myeloma has been in a very long remission. One friend's neighbor has been in remission for 14 years with no transplant. Another friend's father is in remission for 10+ years with no transplant.
These people look at me as if I'm crazy when I look so depressed and talk about the scary outlook of myeloma. Is this really unlikely that all these people are in such long term remissions? Seems like everyone on here is happy with any remission averaging about two years.
I know this is good news, but did anyone else have this experience when sharing a new diagnosis with friends and relatives?
Forums
Re: Long remissions: how common are they?
Hi hopeful27,
If you're interested in how long people here in the forum were in remission after their first treatment regimen, these two recent Beacon polls may interest you:
For those of you who underwent stem cell transplantation as part of your initial therapy, how long did your first remission last?
For those of you who did not undergo stem cell transplantation as part of your initial therapy, how long did your first remission last?
If you're more interested in how long it's been since people here were diagnosed with myeloma, then this polls may help:
For all of you who have active (not smoldering) myeloma, how long has it been since you were diagnosed with active multiple myeloma?
If you're interested in how long people here in the forum were in remission after their first treatment regimen, these two recent Beacon polls may interest you:
For those of you who underwent stem cell transplantation as part of your initial therapy, how long did your first remission last?
For those of you who did not undergo stem cell transplantation as part of your initial therapy, how long did your first remission last?
If you're more interested in how long it's been since people here were diagnosed with myeloma, then this polls may help:
For all of you who have active (not smoldering) myeloma, how long has it been since you were diagnosed with active multiple myeloma?
Re: Long remissions: how common are they?
Hi Hopeful-
I've had the same experience. Hear about all these really healthy patients who've been in remission for a long time and my family kind of assumes I'll be a lucky one. They don't understand why I want to "plan for the worst." Keep in mind that it is a biased sample. Only those still around to tell their stories are represented. Someone in midst of a relapse may not be sharing that at the church coffee hour.
That being said, we should recognize that with a median survival now of 5+ years, that means half the people are living longer, and some will live MUCH longer. It looks particularly good for those who achieve a stringent CR -- about 30% of them stay in remission very long term in many studies I see. Plus survival numbers are always dated since they are based on patients treated with older, worse drugs than we have now. So those of us being treated now with multiple drug combinations will probably have better outlooks.
In summary, I think we should recognize the reality of a serious and scary diagnosis ... but stay hopeful and positive and be inspired by those long-term remissions. I hope to be around at least long enough to see the oncologists stop arguing about whether myeloma is curable!
I've had the same experience. Hear about all these really healthy patients who've been in remission for a long time and my family kind of assumes I'll be a lucky one. They don't understand why I want to "plan for the worst." Keep in mind that it is a biased sample. Only those still around to tell their stories are represented. Someone in midst of a relapse may not be sharing that at the church coffee hour.
That being said, we should recognize that with a median survival now of 5+ years, that means half the people are living longer, and some will live MUCH longer. It looks particularly good for those who achieve a stringent CR -- about 30% of them stay in remission very long term in many studies I see. Plus survival numbers are always dated since they are based on patients treated with older, worse drugs than we have now. So those of us being treated now with multiple drug combinations will probably have better outlooks.
In summary, I think we should recognize the reality of a serious and scary diagnosis ... but stay hopeful and positive and be inspired by those long-term remissions. I hope to be around at least long enough to see the oncologists stop arguing about whether myeloma is curable!
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Tough Mom - Who do you know with myeloma?: myself
- When were you/they diagnosed?: January 2013
- Age at diagnosis: 45
Re: Long remissions: how common are they?
Call me a pessimist ... call me anything you like, but I'm starting to get annoyed at all those people who show me that the 'median age of survival' is five years, or seven, or whatever it is, and then say 'See? You are going to live a good long time."
Yeah, half the folks will make it longer than five years.
BUT HALF DON'T.
Now I'll be honest here: although I am 'high risk," I had a really good response to my first therapies and auto transplant. I'm currently in remission and on Revlimid. I'm doing fine, and my bones don't have any holes in them. In fact, except for the fact that I'm being TREATED for multiple myeloma, nobody would know I had it, not even me. I'm in good shape. I really expect to be in the 'good half' and have no reason to think I won't be.
But.
That's not a guarantee, and frankly, because of all the 'let's ignore the half that don't and pretend that the half that survive are the only folks who count' hooplah, I'm being given a great deal of flak over my wish to settle things like finances, my house, who will care for my elderly parents, a will ... it's as if those around me see my wanting to do this a sign that I'm a hypochondriacal pessimist. I'm not. I just want to get that stuff handled so I can simply live my life and not worry about it.
As for me, I'll probably BE one of those 'long remission stories." There's no real reason for me not to be one. But I do like to live in 'realville.'
Yeah, half the folks will make it longer than five years.
BUT HALF DON'T.
Now I'll be honest here: although I am 'high risk," I had a really good response to my first therapies and auto transplant. I'm currently in remission and on Revlimid. I'm doing fine, and my bones don't have any holes in them. In fact, except for the fact that I'm being TREATED for multiple myeloma, nobody would know I had it, not even me. I'm in good shape. I really expect to be in the 'good half' and have no reason to think I won't be.
But.
That's not a guarantee, and frankly, because of all the 'let's ignore the half that don't and pretend that the half that survive are the only folks who count' hooplah, I'm being given a great deal of flak over my wish to settle things like finances, my house, who will care for my elderly parents, a will ... it's as if those around me see my wanting to do this a sign that I'm a hypochondriacal pessimist. I'm not. I just want to get that stuff handled so I can simply live my life and not worry about it.
As for me, I'll probably BE one of those 'long remission stories." There's no real reason for me not to be one. But I do like to live in 'realville.'
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Long remissions: how common are they?
This disease is so varied that making broad generalizations of how long people will live with it is not really meaningful. If a patient has a high risk, very aggressive form, the survival outcome will be significantly different than a patient that has standard risk disease. Also the age and general overall health of the patient have to be taken into account. Obviously, a fairly young patient in good overall physical shape stands a better chance of long term survival than an older patient with other chronic disorders that is in poor overall health.
All you have to do is go to the blogs section of this site and read how varied peoples experiences are. Generally, non cancer patients really want to hear that you are doing well -- it makes them feel better. They don't want to hear or talk about death because it forces them to dwell on their own mortality. It is only human nature to avoid that conversation and people feel uncomfortable discussing it.
I usually tell people that I have a chronic disease that is not curable but is treatable -- something similar to diabetes. I have to get treatments, but they keep the disease at bay. I will have to take the medications the rest of my life, but there is a good chance they will keep me in remission. People can relate to diabetes, so that is why I use that analogy. I don't talk about the probability of relapse since they really don't want to hear about it.
All you have to do is go to the blogs section of this site and read how varied peoples experiences are. Generally, non cancer patients really want to hear that you are doing well -- it makes them feel better. They don't want to hear or talk about death because it forces them to dwell on their own mortality. It is only human nature to avoid that conversation and people feel uncomfortable discussing it.
I usually tell people that I have a chronic disease that is not curable but is treatable -- something similar to diabetes. I have to get treatments, but they keep the disease at bay. I will have to take the medications the rest of my life, but there is a good chance they will keep me in remission. People can relate to diabetes, so that is why I use that analogy. I don't talk about the probability of relapse since they really don't want to hear about it.
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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: Long remissions: how common are they?
Hi Hopeful27,
If what you are saying is true that would be an amazing coincidence. Prior to novel agents, common induction was either melphalan + prednisone, or VAD. The patient 15 years out would not have had access to novel agents. The patient at 10 may have had access to Velcade or thalidomide in a clinical trial.
To give you an idea as to how rare a CR was prior to novel agents without doing a transplant, this study compared Velcade-melphalan-prednisone to melphalan-prednisone.
"The time to progression among patients receiving bortezomib plus melphalan-prednisone (bortezomib group) was 24.0 months, as compared with 16.6 months among those receiving melphalan-prednisone alone (control group) (hazard ratio for the bortezomib group, 0.48; P<0.001). The proportions of patients with a partial response or better were 71% in the bortezomib group and 35% in the control group; complete-response rates were 30% and 4%, respectively (P<0.001). The median duraation of the response was 19.9 months in the bortezomib group and 13.1 months in the control group."
http://www.nejm.org/doi/pdf/10.1056/NEJMoa0801479
Here is a study that compared Velcade/dex to VAD.
"Results from this large clinical trial were presented by Professor Harousseau.
The VcD arm vs the VAD arm showed:
• 95% of patients were alive at 1 year compared to 92%.
• A CR rate of 19% compared to 8% as induction therapy (P = .0004).
• A CR rate of 35% compared to 23% posttransplantation (P = .0063).
See more here.
For you to know at least 2 people who likely did induction therapy that produced either 8% or 4% CR rates, and those 2 people have been in remission for 10 and 15 years without a transplant, is an almost unbelievable coincidence.
Mark
If what you are saying is true that would be an amazing coincidence. Prior to novel agents, common induction was either melphalan + prednisone, or VAD. The patient 15 years out would not have had access to novel agents. The patient at 10 may have had access to Velcade or thalidomide in a clinical trial.
To give you an idea as to how rare a CR was prior to novel agents without doing a transplant, this study compared Velcade-melphalan-prednisone to melphalan-prednisone.
"The time to progression among patients receiving bortezomib plus melphalan-prednisone (bortezomib group) was 24.0 months, as compared with 16.6 months among those receiving melphalan-prednisone alone (control group) (hazard ratio for the bortezomib group, 0.48; P<0.001). The proportions of patients with a partial response or better were 71% in the bortezomib group and 35% in the control group; complete-response rates were 30% and 4%, respectively (P<0.001). The median duraation of the response was 19.9 months in the bortezomib group and 13.1 months in the control group."
http://www.nejm.org/doi/pdf/10.1056/NEJMoa0801479
Here is a study that compared Velcade/dex to VAD.
"Results from this large clinical trial were presented by Professor Harousseau.
The VcD arm vs the VAD arm showed:
• 95% of patients were alive at 1 year compared to 92%.
• A CR rate of 19% compared to 8% as induction therapy (P = .0004).
• A CR rate of 35% compared to 23% posttransplantation (P = .0063).
See more here.
For you to know at least 2 people who likely did induction therapy that produced either 8% or 4% CR rates, and those 2 people have been in remission for 10 and 15 years without a transplant, is an almost unbelievable coincidence.
Mark
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Mark
Re: Long remissions: how common are they?
Actually, I believe that is more than just coincidence. CR percentages and median survival stats don't paint the picture for the overall distribution of survival rate. Also, remember that folks tend to use the term "remission" pretty loosely, as opposed to its true clinical definition.
As an example, look at these stats that come out of England. Also, remember that we are currently on a pretty positive trend as far as improving survivability and we don't have all the stats in that factor in all the benefits of these recent developments.
ww.cancerresearchuk.org/cancer-help/type/myeloma/treatment/statistics-and-outlook-for-myeloma
An excerpt from the above link (remembering that the the UK doesn't have nearly as much access to the new drugs that we do in the USA):
"... Overall outcome
Overall, about 77 out of every 100 people (77%) diagnosed with myeloma live for at least a year after diagnosis. About 47 out of every 100 (47%) live for at least 5 years. And about 33 out of every 100 people live for at least 10 years.
As with many other types of cancer, the outcome depends on how advanced your myeloma is when it is diagnosed. In other words, the stage of your myeloma. Another important factor in myeloma is your age and fitness, and the type of treatment you have. There are some very intensive treatments available for myeloma and to have them you need to be well enough to get through them. Your doctor will consider whether these treatments may help you"
As an example, look at these stats that come out of England. Also, remember that we are currently on a pretty positive trend as far as improving survivability and we don't have all the stats in that factor in all the benefits of these recent developments.
ww.cancerresearchuk.org/cancer-help/type/myeloma/treatment/statistics-and-outlook-for-myeloma
An excerpt from the above link (remembering that the the UK doesn't have nearly as much access to the new drugs that we do in the USA):
"... Overall outcome
Overall, about 77 out of every 100 people (77%) diagnosed with myeloma live for at least a year after diagnosis. About 47 out of every 100 (47%) live for at least 5 years. And about 33 out of every 100 people live for at least 10 years.
As with many other types of cancer, the outcome depends on how advanced your myeloma is when it is diagnosed. In other words, the stage of your myeloma. Another important factor in myeloma is your age and fitness, and the type of treatment you have. There are some very intensive treatments available for myeloma and to have them you need to be well enough to get through them. Your doctor will consider whether these treatments may help you"
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Long remissions: how common are they?
Hi Multibilly,
I do think that is quite a coincidence that someone could mention myeloma to a few neighbors and hear about a lot of long term remissions without transplant. Most people here on the Forum say most of the people they know never heard of it.
Can you show me any peer reviewed papers that show long term remissions without transplants for patients diagnosed 10 plus years ago? The stats you showed made no mention of what therapies the long term survivors used. We all know there are long term survivors that did transplants.
Mark
I do think that is quite a coincidence that someone could mention myeloma to a few neighbors and hear about a lot of long term remissions without transplant. Most people here on the Forum say most of the people they know never heard of it.
Can you show me any peer reviewed papers that show long term remissions without transplants for patients diagnosed 10 plus years ago? The stats you showed made no mention of what therapies the long term survivors used. We all know there are long term survivors that did transplants.
Mark
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Mark
Re: Long remissions: how common are they?
Mark,
I know you only value data that comes out of peer reviewed reports. I don't happen to use that filter for choosing data to make medical decisions and for forming my own philosophy on my prognosis and treatment plans, but that's my choice. So, respectfully, I'm not going to take the time to research this further.
But, based on my own experience, I have already met one person that is a close friend of my brother that has lived more than 10 years with multiple myeloma ... and without a transplant. I have also only confessed my development of the disease to my immediate family and they are all sworn to secrecy. I also don't quiz the folks in the waiting room at the cancer center I go to every 2-3 months for my checkup. So, it's not like I've put out feelers on this topic, but I could easily see finding another person that is a long term non-transplant multiple myeloma survivor if I made my condition public to my circle of neighbors, friends and work contacts.
Regarding Dianaiad's post, I have already prepared for the worst by getting all of my financial and legal affairs together (which is a large relief to myself and is much appreciated by my wife and kids). That is simply a smart and responsible thing to do and nobody should suffer any grief from anybody for taking on that task.
BUT, I am living my life with great optimism based on all the treatments available to me today (and the new ones that will be available to me in the future) should I progress to symptomatic multiple myeloma. It also was a huge relief and incredibly empowering to me to have made a decision to not utilize a transplant (auto or allo) in the foreseeable future, as that weighed heavily on my mind when I first began this journey. I'm especially grateful to those on the Beacon that helped me get to that point in my decision process.
Have a good weekend y'all.
I know you only value data that comes out of peer reviewed reports. I don't happen to use that filter for choosing data to make medical decisions and for forming my own philosophy on my prognosis and treatment plans, but that's my choice. So, respectfully, I'm not going to take the time to research this further.
But, based on my own experience, I have already met one person that is a close friend of my brother that has lived more than 10 years with multiple myeloma ... and without a transplant. I have also only confessed my development of the disease to my immediate family and they are all sworn to secrecy. I also don't quiz the folks in the waiting room at the cancer center I go to every 2-3 months for my checkup. So, it's not like I've put out feelers on this topic, but I could easily see finding another person that is a long term non-transplant multiple myeloma survivor if I made my condition public to my circle of neighbors, friends and work contacts.
Regarding Dianaiad's post, I have already prepared for the worst by getting all of my financial and legal affairs together (which is a large relief to myself and is much appreciated by my wife and kids). That is simply a smart and responsible thing to do and nobody should suffer any grief from anybody for taking on that task.
BUT, I am living my life with great optimism based on all the treatments available to me today (and the new ones that will be available to me in the future) should I progress to symptomatic multiple myeloma. It also was a huge relief and incredibly empowering to me to have made a decision to not utilize a transplant (auto or allo) in the foreseeable future, as that weighed heavily on my mind when I first began this journey. I'm especially grateful to those on the Beacon that helped me get to that point in my decision process.
Have a good weekend y'all.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Long remissions: how common are they?
I am so glad to read these posts. I feel a lot like most of you.
People don't understand that just because I have to be a realist and be ready for anything, especially a relapse, doesn't mean I am a worry wort. I had a very aggressive form of multiple myeloma and by God's grace am in a complete remission and on Revlimid. I have family and friends that assume I am cured and others that are living life like this didn't happen, and that there is nothing to be so concerned about.
I don't like that people don't really listen, including some health care personnel. If I report that my hip, shoulder or back hurts, it's arthritis. If I report tiny red spots on my arms, they don't seem alarmed at all, even when my skin will spontaneously bleed on occasion.
My transplant doc told me that my auto SCT might last 2 years, if I am lucky. I am 7 months away from that milestone. Sure would love to write a letter to him on my 2nd re-birthday.
Since I have no control over relapse, I am trying to live life according to my new normal, because life is never the same as before multiple myeloma.
Thanks for being there Myeloma Beacon. I know I can come here and others will understand!
People don't understand that just because I have to be a realist and be ready for anything, especially a relapse, doesn't mean I am a worry wort. I had a very aggressive form of multiple myeloma and by God's grace am in a complete remission and on Revlimid. I have family and friends that assume I am cured and others that are living life like this didn't happen, and that there is nothing to be so concerned about.
I don't like that people don't really listen, including some health care personnel. If I report that my hip, shoulder or back hurts, it's arthritis. If I report tiny red spots on my arms, they don't seem alarmed at all, even when my skin will spontaneously bleed on occasion.
My transplant doc told me that my auto SCT might last 2 years, if I am lucky. I am 7 months away from that milestone. Sure would love to write a letter to him on my 2nd re-birthday.
Since I have no control over relapse, I am trying to live life according to my new normal, because life is never the same as before multiple myeloma.
Thanks for being there Myeloma Beacon. I know I can come here and others will understand!
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WeatherNurse13 - Name: Gracie
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 10/2012
- Age at diagnosis: 49
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