What exactly do people with multiple myeloma die from? Is it kidney failure or what exactly ends up taking their life?
Terri
Forums
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Terri Michigan - Name: Terri Michigan
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 2009
- Age at diagnosis: 45
Re: What do people with multiple myeloma die from?
Terri,
It can be lots of different things. From what I understand, it is often pneumonia from a weakened immune system.
David
It can be lots of different things. From what I understand, it is often pneumonia from a weakened immune system.
David
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Arizonan - Name: Arizonan
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2010
- Age at diagnosis: 54
Re: What do people with multiple myeloma die from?
Thanks for your reply David.
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Terri Michigan - Name: Terri Michigan
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 2009
- Age at diagnosis: 45
Re: What do people with multiple myeloma die from?
This is a good question Terri and I'm glad you asked it. I know it's a difficult topic to discuss, but I think it's one that deserves discussion since the information could be very helpful.
I think that what exactly happens in the final stages of myeloma varies, like so many things myeloma-related, from person to person. I suspect that David is right that, in many cases, it's an infection such as the flu or pneumonia. But I don't think that's always the case.
For example, there was a myeloma blogger from Idaho, Judy Malkiewicz, who died last year of myeloma. In her case, the myeloma simply advanced to the point where she had basically 100 percent plasma cells in her bone marrow, with probably super high levels of monoclonal protein in her blood. From what is written on her blog, it seems that her body just basically shut down from the burden the myeloma was imposing on her system.
Here are the postings from her blog from the last ones she made on her own until the update about her passing:
Last two postings by Judy:
http://jmmultiplemyeloma.blogspot.com/2013/08/relapsed-high-risk-multiple-myeloma_29.html
http://jmmultiplemyeloma.blogspot.com/2013/08/blog-post_31.html
Updates from her family members:
http://jmmultiplemyeloma.blogspot.com/2013/09/relapsed-high-risk-myeloma-update.html
http://jmmultiplemyeloma.blogspot.com/2013/09/relapsed-high-risk-myeloma-update_12.html
http://jmmultiplemyeloma.blogspot.com/2013/09/relapsed-high-risk-myeloma-update_19.html
http://jmmultiplemyeloma.blogspot.com/2013/09/our-saddest-day-september-25-2013.html
In Judy's case, it was about three weeks from the last posting that she made on her own until she passed away.
Another case went quite differently. A myeloma blogger from the UK -- Sean Tiernan -- passed away very suddenly and tragically last year. In his case, his M-spike apparently was relatively high (around 3.0 g/dL), but not ridiculously high, shortly before he passed. His death, however, seems to have been the result of an infection that got to him while his immune system was compromised.
In Sean's case, the "final stages" of myeloma went very quickly. He posted one day that he seemed to be doing okay, and, within a week, his family posted that he had passed away.
Here is the last posting that he made:
http://mylifewithmyeloma.blogspot.com/2012/05/neglected-blog.html
and here are two postings his family members made:
http://mylifewithmyeloma.blogspot.com/2012/05/some-very-sad-news.html
http://mylifewithmyeloma.blogspot.com/2012/06/paraproteins-were-up.html
Hope this helps a bit. As I said, I realize this isn't exactly a pleasant topic to discuss, and I'm sorry if I've offended anyone by being a bit "factual" in how I've addressed it. Please don't misinterpret what I've written to mean that I wasn't saddened by the passing of Judy and Sean. I was -- very much so. I think, however, that both of them would be glad to know that the information in their blogs is proving helpful to other myeloma patients even after they've passed on from 'this mortal coil.'
I think that what exactly happens in the final stages of myeloma varies, like so many things myeloma-related, from person to person. I suspect that David is right that, in many cases, it's an infection such as the flu or pneumonia. But I don't think that's always the case.
For example, there was a myeloma blogger from Idaho, Judy Malkiewicz, who died last year of myeloma. In her case, the myeloma simply advanced to the point where she had basically 100 percent plasma cells in her bone marrow, with probably super high levels of monoclonal protein in her blood. From what is written on her blog, it seems that her body just basically shut down from the burden the myeloma was imposing on her system.
Here are the postings from her blog from the last ones she made on her own until the update about her passing:
Last two postings by Judy:
http://jmmultiplemyeloma.blogspot.com/2013/08/relapsed-high-risk-multiple-myeloma_29.html
http://jmmultiplemyeloma.blogspot.com/2013/08/blog-post_31.html
Updates from her family members:
http://jmmultiplemyeloma.blogspot.com/2013/09/relapsed-high-risk-myeloma-update.html
http://jmmultiplemyeloma.blogspot.com/2013/09/relapsed-high-risk-myeloma-update_12.html
http://jmmultiplemyeloma.blogspot.com/2013/09/relapsed-high-risk-myeloma-update_19.html
http://jmmultiplemyeloma.blogspot.com/2013/09/our-saddest-day-september-25-2013.html
In Judy's case, it was about three weeks from the last posting that she made on her own until she passed away.
Another case went quite differently. A myeloma blogger from the UK -- Sean Tiernan -- passed away very suddenly and tragically last year. In his case, his M-spike apparently was relatively high (around 3.0 g/dL), but not ridiculously high, shortly before he passed. His death, however, seems to have been the result of an infection that got to him while his immune system was compromised.
In Sean's case, the "final stages" of myeloma went very quickly. He posted one day that he seemed to be doing okay, and, within a week, his family posted that he had passed away.
Here is the last posting that he made:
http://mylifewithmyeloma.blogspot.com/2012/05/neglected-blog.html
and here are two postings his family members made:
http://mylifewithmyeloma.blogspot.com/2012/05/some-very-sad-news.html
http://mylifewithmyeloma.blogspot.com/2012/06/paraproteins-were-up.html
Hope this helps a bit. As I said, I realize this isn't exactly a pleasant topic to discuss, and I'm sorry if I've offended anyone by being a bit "factual" in how I've addressed it. Please don't misinterpret what I've written to mean that I wasn't saddened by the passing of Judy and Sean. I was -- very much so. I think, however, that both of them would be glad to know that the information in their blogs is proving helpful to other myeloma patients even after they've passed on from 'this mortal coil.'
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JimNY
Re: What do people with multiple myeloma die from?
While I don't have a definitive answer, I believe my sister passed from what JimNY describes.
She basically just wasted away, much as my father did from liver cancer.
She basically just wasted away, much as my father did from liver cancer.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: What do people with multiple myeloma die from?
It isn't a very nice topic, but we all want to stay as healthy as possible under our circumstances, so it's good to be aware of what can happen.
I used to read Judy's blog also, and she was so brave and tried so hard to survive, that it was really sad when she died. Unfortunately I knew people too who have passed away from myeloma. Generally, it was known that they were really ill and in hospital at the end. Sometimes whatever treatments are available, it still isn't enough to turn the cancer back.
But I have been told by a really long term survivor who sometimes posts here, that the majority of fatalities (if you can call them that) are due to infections such as pneumonia. Of course one's immune system being weak leaves a patient open to infection. So if one can be as careful as possible to avoid infections, that may increases one's chances of survival.
With myeloma, it seems that we are always waiting for the next therapy, that will help those who need to try something new. There are so many promising treatments coming on stream, that we may benefit from them in the future.
I used to read Judy's blog also, and she was so brave and tried so hard to survive, that it was really sad when she died. Unfortunately I knew people too who have passed away from myeloma. Generally, it was known that they were really ill and in hospital at the end. Sometimes whatever treatments are available, it still isn't enough to turn the cancer back.
But I have been told by a really long term survivor who sometimes posts here, that the majority of fatalities (if you can call them that) are due to infections such as pneumonia. Of course one's immune system being weak leaves a patient open to infection. So if one can be as careful as possible to avoid infections, that may increases one's chances of survival.
With myeloma, it seems that we are always waiting for the next therapy, that will help those who need to try something new. There are so many promising treatments coming on stream, that we may benefit from them in the future.
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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: What do people with multiple myeloma die from?
Wow, thank you so much for all of the information! I will definitely read the blogs you posted and learn from it. It is a blessing that they are still helping others on their journey threw all of these even after they are gone.
I am very detail oriented and want to know what, who, when and why of everything. I know it is a tough subject for some, which is why I was hesitant to post the question and didn't know if many would respond. I like the unsweetened version of things and just like to know the truth of what is very likely to take place in my future. I know people are living longer and new drugs are coming out, but it isn't as of yet curable either.
Thanks again for sharing your knowledge.
Terri
I am very detail oriented and want to know what, who, when and why of everything. I know it is a tough subject for some, which is why I was hesitant to post the question and didn't know if many would respond. I like the unsweetened version of things and just like to know the truth of what is very likely to take place in my future. I know people are living longer and new drugs are coming out, but it isn't as of yet curable either.
Thanks again for sharing your knowledge.
Terri
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Terri Michigan - Name: Terri Michigan
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 2009
- Age at diagnosis: 45
Re: What do people with multiple myeloma die from?
Terri,
This is not a cheerful topic, but I feel it is good that it is brought up occasionally and discussed. A lot is discussed about myeloma treatments and the difficulties and discomforts people endure going through them, but not much is said about how difficult it can be to die from myeloma.
I believe that sometimes hearing so much more about the tribulations of treatment, and not much about what it is like to die from the myeloma, can lead to the mistaken impression that the cure is worse than the disease. I do not believe this is the case. I have seen people fearful of going through treatment and suffering discomfort they feel that will bring them, and instead go to what they think is an easier and more comfortable path of palliative care only. Having seen people in palliative care, I can say that that is not an escape from discomfort and suffering.
This is not a cheerful topic, but I feel it is good that it is brought up occasionally and discussed. A lot is discussed about myeloma treatments and the difficulties and discomforts people endure going through them, but not much is said about how difficult it can be to die from myeloma.
I believe that sometimes hearing so much more about the tribulations of treatment, and not much about what it is like to die from the myeloma, can lead to the mistaken impression that the cure is worse than the disease. I do not believe this is the case. I have seen people fearful of going through treatment and suffering discomfort they feel that will bring them, and instead go to what they think is an easier and more comfortable path of palliative care only. Having seen people in palliative care, I can say that that is not an escape from discomfort and suffering.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: What do people with multiple myeloma die from?
Terri:
You seem to want the graphic version, ...so tape up your socks. Some just might consider this "unseemly."
Short Clinical answer(s):
The old people's friend (pneumonia) ; Sepsis ( Blood borne infection); Kidney failure (increasing levels of ammonia / urea / wastes, etc in your blood stream) ; Fulminating secondary infections and fevers; Fluid build up in lungs, abdomen, or Peritoneum, myocardial sac, and a cardiac arrest--usually due to some combination, of the above. ( ie.Third Spacing, etc)
Immediate preceding event:
--increasingly ineffective "fake"White cells ( dey call 'em MONOCLONES), infection, abnormal PCO2 and CO2 levels/ inadequate gas exchange(s), Protein leakage (low Albumin) and vascular collapse; fluid leaks out and builds-up in the lungs/ abdomen, metabolic changes (acidosis) , etc --leading to further inadequate oxygen saturation, an ever increasing serial organ failure, hypoxia starts in earnest, cell death begins, and usually a twilight / unconscious state is experienced-- sometimes with a period of pronounced Mouth breathing,... and eventual death..
A sad circumstance of infection, leading to poor metabolic and organ function, declining reserves, mechanical pressures, failing pumps, etc,...and no Calvary to the rescue..
Anxiety:
Often, Ativan or other sedatives are given to ward off the feeling/anxiety surrounding increasing sensation of asphyxiation...if needed.
Most folks just need a "Whiff" of Ativan, as they can't even metabolize the drug, due to "Crumping" organ failures. Meanwhile, the Liver and kidneys, primarily shut down. Antibiotics no longer work. Calcium, sodium and Potassium levels go "Wacko". Clots begin to form. Tumors go wild...and "dump" all kinds of stuff into the blood-stream. Homeostasis is lost.
The body basically fights a losing battle with itself, and it's failing organs. It tires out, and it stops..... functioning. The Heart finally stops.
What an amazing organ--almost a Billion beats, without a skip!
It has survived breakups, divorces, kids, loss of friends and family, elections, job loss, all manner of shocks and disappointments, and even mean bosses--but not this.
Same basic mechanisms of death as any person who is old, or has most cancers, COPD, and most cardiac issues.
or if they are healthier,.....they are Hit by a Bus, a car, plane crash, etc...and sustain multiple trauma.... Just like anybody else on earth.
The foregoing is about as unsweetened, as most can likely tolerate, here.
Hope it scratches your itch.
Good Luck.
You seem to want the graphic version, ...so tape up your socks. Some just might consider this "unseemly."
Short Clinical answer(s):
The old people's friend (pneumonia) ; Sepsis ( Blood borne infection); Kidney failure (increasing levels of ammonia / urea / wastes, etc in your blood stream) ; Fulminating secondary infections and fevers; Fluid build up in lungs, abdomen, or Peritoneum, myocardial sac, and a cardiac arrest--usually due to some combination, of the above. ( ie.Third Spacing, etc)
Immediate preceding event:
--increasingly ineffective "fake"White cells ( dey call 'em MONOCLONES), infection, abnormal PCO2 and CO2 levels/ inadequate gas exchange(s), Protein leakage (low Albumin) and vascular collapse; fluid leaks out and builds-up in the lungs/ abdomen, metabolic changes (acidosis) , etc --leading to further inadequate oxygen saturation, an ever increasing serial organ failure, hypoxia starts in earnest, cell death begins, and usually a twilight / unconscious state is experienced-- sometimes with a period of pronounced Mouth breathing,... and eventual death..
A sad circumstance of infection, leading to poor metabolic and organ function, declining reserves, mechanical pressures, failing pumps, etc,...and no Calvary to the rescue..
Anxiety:
Often, Ativan or other sedatives are given to ward off the feeling/anxiety surrounding increasing sensation of asphyxiation...if needed.
Most folks just need a "Whiff" of Ativan, as they can't even metabolize the drug, due to "Crumping" organ failures. Meanwhile, the Liver and kidneys, primarily shut down. Antibiotics no longer work. Calcium, sodium and Potassium levels go "Wacko". Clots begin to form. Tumors go wild...and "dump" all kinds of stuff into the blood-stream. Homeostasis is lost.
The body basically fights a losing battle with itself, and it's failing organs. It tires out, and it stops..... functioning. The Heart finally stops.
What an amazing organ--almost a Billion beats, without a skip!
It has survived breakups, divorces, kids, loss of friends and family, elections, job loss, all manner of shocks and disappointments, and even mean bosses--but not this.
Same basic mechanisms of death as any person who is old, or has most cancers, COPD, and most cardiac issues.
or if they are healthier,.....they are Hit by a Bus, a car, plane crash, etc...and sustain multiple trauma.... Just like anybody else on earth.
The foregoing is about as unsweetened, as most can likely tolerate, here.
Hope it scratches your itch.
Good Luck.
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Rneb
Re: What do people with multiple myeloma die from?
I think were all grown ups here. Nothing wrong with stating it like it is.
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gmarv - Name: marvin
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: aug.2012
- Age at diagnosis: 57