Hello Hoodster
One thing you may want to keep in mind concerning how much time any given multiple myeloma patient has to live is that such estimates are just that - estimates based on a statistical analysis of historical data concerning the characteristics of those who have died at any given time.
There are always outliers - people who live much longer as well as those who (unfortunately) don't survive as long as predicted.
The most that you can do is learn as much as you can about the disease and seek out the best treatment. I also recommend that you do the standard advance planning - and here I would include investigating options for hospice care. I know that my greatest fear, should treatment options eventually yield to disease progression, was suffering. So I sought out a hospice provider with a reputation for great palliative care. The provider convinced me that I would not suffer a painful death when the time for my death did arrive. I can't begin to tell you what a tremendous relief that was.
I think you are also wise to have sought out therapy. Therapy with the right person can work wonders. It has for me.
Having this disease and facing the uncertain future that comes with it is rough, very rough indeed. So I want to wish you the very best of luck. You may be one of the long term survivors we read about - people who defy the odds and live a long, long time.
I also wish you happy times. There is truth to the old saw about the quality of one's life being more important than the number of weeks, months, or years that one lives.
Forums
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: What do people with multiple myeloma die from?
Mr PH
I think it seems very difficult for most multiple myeloma patients to come to terms with the uncertainty of how things will turn out for them with this disease and the shortening of what they hoped would be a very long life.
The term incurable is a problem when some treatments are deemed/ promoted to render patients effectively cured. The fact that people try to compare their experience of living with multiple myeloma and its treatment with that of others who give them hope of long survival epitomises this.
Hoodster
Your grandson will hopefully have you around long enough to understand that not everyone lives to be 100. You have a right to feel as you do and it is good you are getting therapy to manage the feelings that can overwhelm. Do not focus on how long you think you have, but on living your life to the fullest you can and enjoying each moment, because there is no one in the world who knows when life for them will end. We are not statistics.
Best wishes
Edna
I think it seems very difficult for most multiple myeloma patients to come to terms with the uncertainty of how things will turn out for them with this disease and the shortening of what they hoped would be a very long life.
The term incurable is a problem when some treatments are deemed/ promoted to render patients effectively cured. The fact that people try to compare their experience of living with multiple myeloma and its treatment with that of others who give them hope of long survival epitomises this.
Hoodster
Your grandson will hopefully have you around long enough to understand that not everyone lives to be 100. You have a right to feel as you do and it is good you are getting therapy to manage the feelings that can overwhelm. Do not focus on how long you think you have, but on living your life to the fullest you can and enjoying each moment, because there is no one in the world who knows when life for them will end. We are not statistics.
Best wishes
Edna
Re: What do people with multiple myeloma die from?
Hoodster,
While there are statistics out there for the average survival time and other metrics for the population of those with myeloma as a whole, there can be wide variation or a large standard deviation in these averages. The net result is I would be skeptical of using those averages as a guide for the prognosis of an individual. If the average survival time is 10 years for example, you will find 20 year survivors as in your friends relative, but then there are those who only survive a year or two, to make a 10 year average.
I am surprised that you have been told you have approximately 8 years after start of treatment. From what I have learned about myeloma, I do not see how such a long term prognosis can be made with much certainty. I can see where a treatment center may say the average prognosis for the patients they treat is 8 years, but by no means do I see how they can say with assurance that means your prognosis will be 8 years because of the wide variation in how people respond to the disease and treatment as mentioned above. I have never heard of anyone before with myeloma being given such a long term prognosis by a professional medical provider.
Eight years is a reasonable number for an average, but I would be prepared for the possibility that you could go much longer or shorter than that. When I think about my own prognosis, I only look out about a year, I feel reasonably assured based on how things are today I will likely make it for another year, beyond that I don't feel I nor the medical professionals treating me can really make any kind of prediction.
I hear lot of stories about people with other cancers being given time frame prognosis that have been wildly off, surviving for many months or years beyond what their doctors told them. Which makes me feel prognosis predictions for cancer in general is hardly an exact science.
While there are statistics out there for the average survival time and other metrics for the population of those with myeloma as a whole, there can be wide variation or a large standard deviation in these averages. The net result is I would be skeptical of using those averages as a guide for the prognosis of an individual. If the average survival time is 10 years for example, you will find 20 year survivors as in your friends relative, but then there are those who only survive a year or two, to make a 10 year average.
I am surprised that you have been told you have approximately 8 years after start of treatment. From what I have learned about myeloma, I do not see how such a long term prognosis can be made with much certainty. I can see where a treatment center may say the average prognosis for the patients they treat is 8 years, but by no means do I see how they can say with assurance that means your prognosis will be 8 years because of the wide variation in how people respond to the disease and treatment as mentioned above. I have never heard of anyone before with myeloma being given such a long term prognosis by a professional medical provider.
Eight years is a reasonable number for an average, but I would be prepared for the possibility that you could go much longer or shorter than that. When I think about my own prognosis, I only look out about a year, I feel reasonably assured based on how things are today I will likely make it for another year, beyond that I don't feel I nor the medical professionals treating me can really make any kind of prediction.
I hear lot of stories about people with other cancers being given time frame prognosis that have been wildly off, surviving for many months or years beyond what their doctors told them. Which makes me feel prognosis predictions for cancer in general is hardly an exact science.
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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?
As long as this thread is pushing the envelope, I wonder what percent of myeloma patients commit suicide? Suicide is a subjective term, so might be an ambiguous percent, but I'm sure some do take that route.
I realize I do not know how I'll be when I'm near the end, but I plan on having an end of life prescription nearby.
I'm not religious so don't have those issues with euthanasia. And I can't imagine putting myself through the last part of this disease, or more importantly, have my kids watch me suffer.
Just having that option gives me a lot of comfort, even knowing I might not use it.
I realize I do not know how I'll be when I'm near the end, but I plan on having an end of life prescription nearby.
I'm not religious so don't have those issues with euthanasia. And I can't imagine putting myself through the last part of this disease, or more importantly, have my kids watch me suffer.
Just having that option gives me a lot of comfort, even knowing I might not use it.
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Stann - Name: Stann
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 9/11/09
- Age at diagnosis: 46
Re: What do people with multiple myeloma die from?
Stann
I have experienced friends and family having 'incurable' / long term illnesses, declining and dying either from these or from the medical interventions, including being on life support machines at the end. Sadly in the UK most people die in hospital which is the worst situation possible in my experience.
Like you I have been an advocate of voluntary euthanisia, but not assisted suicide. But often people take this route because of lack of end of life care facilities, or fear of suffering. it is difficult to know how one will feel when we are faced head on with the inevitable.
I have now investigated hospices, without family / friends hospice at home is not the solution. So places where people are cared for at the end can give solace. Hospice by its very approach is about controlling the adverse symptoms and suffering towards the end, allowing a kind and peaceful end. The attitude and approach of hospice staff is living with compassion and care. Families and patients often report a positive experience,, as they can have quality time with their relative. I recently saw a video of a hospice in England on the TV, which had a myeloma patient awaiting a second transplant, not everyone goes there to die, many go because they are no longer needing hospital, but need specific symptom control in a clinical setting.
If you and your family can manage to find a hospice that meets your needs you may find a way other than euthanasia. Whatever you choose I wish you well.
Edna
I have experienced friends and family having 'incurable' / long term illnesses, declining and dying either from these or from the medical interventions, including being on life support machines at the end. Sadly in the UK most people die in hospital which is the worst situation possible in my experience.
Like you I have been an advocate of voluntary euthanisia, but not assisted suicide. But often people take this route because of lack of end of life care facilities, or fear of suffering. it is difficult to know how one will feel when we are faced head on with the inevitable.
I have now investigated hospices, without family / friends hospice at home is not the solution. So places where people are cared for at the end can give solace. Hospice by its very approach is about controlling the adverse symptoms and suffering towards the end, allowing a kind and peaceful end. The attitude and approach of hospice staff is living with compassion and care. Families and patients often report a positive experience,, as they can have quality time with their relative. I recently saw a video of a hospice in England on the TV, which had a myeloma patient awaiting a second transplant, not everyone goes there to die, many go because they are no longer needing hospital, but need specific symptom control in a clinical setting.
If you and your family can manage to find a hospice that meets your needs you may find a way other than euthanasia. Whatever you choose I wish you well.
Edna
Re: What do people with multiple myeloma die from?
Our daughter died on October 12 after a 45-month battle with myeloma. She was 36.
Seeing some of the best myeloma doctors at Jefferson and Penn in Philadelphia, with great plans to attack the disease, could not save her. Once relapse came 15 months after her auto transplant, the disease became highly aggressive. She tried many different things and the doctors at Penn were planning on her doing T cell therapy. Plasmacytomas and infection did her in. She developed a plasmacytoma on her trachea, in her lungs, and on her spine. Her body was no longer able to go through the T cell therapy, but there were less toxic drugs and radiation that she did to give her about 6 more months.
We had started preparing our home for hospice care while she was at a facility near us for a few days. Suddenly she slept for 2 days and passed away. Everyone was shocked, it happened so quickly. We thought we still had a few months. Hospice was going to give her comfort and care although she never complained of any pain.
What have I learned? Myeloma is awful. Everyone's disease is different and that is the crux of the problem to find a cure. Reading here on the Beacon you can see that clearly.
Seeing some of the best myeloma doctors at Jefferson and Penn in Philadelphia, with great plans to attack the disease, could not save her. Once relapse came 15 months after her auto transplant, the disease became highly aggressive. She tried many different things and the doctors at Penn were planning on her doing T cell therapy. Plasmacytomas and infection did her in. She developed a plasmacytoma on her trachea, in her lungs, and on her spine. Her body was no longer able to go through the T cell therapy, but there were less toxic drugs and radiation that she did to give her about 6 more months.
We had started preparing our home for hospice care while she was at a facility near us for a few days. Suddenly she slept for 2 days and passed away. Everyone was shocked, it happened so quickly. We thought we still had a few months. Hospice was going to give her comfort and care although she never complained of any pain.
What have I learned? Myeloma is awful. Everyone's disease is different and that is the crux of the problem to find a cure. Reading here on the Beacon you can see that clearly.
Re: What do people with multiple myeloma die from?
Sorry Terrij, 36 is very young.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: What do people with multiple myeloma die from?
Hello Terri:
I have been following your posts and hoped to hear a better update, but I knew the recent news was not wonderful. It is a terrible thing for a parent to have to put to rest a child, even if the child has grown to adulthood. Its a terrible thing for all struggling with multiple myeloma, but especially some of the younger patients who are stricken with aggressive disease. I understand from your posts that you did the best possible job as caretaker for your daughter, and in the end, even while suffering as she did, she knew the love of her close family, which is a blessing. God bless you, your daughter and your family.
I have been following your posts and hoped to hear a better update, but I knew the recent news was not wonderful. It is a terrible thing for a parent to have to put to rest a child, even if the child has grown to adulthood. Its a terrible thing for all struggling with multiple myeloma, but especially some of the younger patients who are stricken with aggressive disease. I understand from your posts that you did the best possible job as caretaker for your daughter, and in the end, even while suffering as she did, she knew the love of her close family, which is a blessing. God bless you, your daughter and your family.
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JPC - Name: JPC
Re: What do people with multiple myeloma die from?
I am so sorry and so sad to hear your news, Terri. I am sure I am not alone when I say that your daughter's story has always touched me in a particularly strong, and painful, way. Your latest news makes that pain even stronger.
Please accept condolences on behalf of myself and all of us here at The Beacon. We wish you, your husband, and the rest of your family all the best. May you find ways to keep each other strong in this difficult time, and may you always hold dear to your hearts everything that was special and beautiful about your daughter.
Please accept condolences on behalf of myself and all of us here at The Beacon. We wish you, your husband, and the rest of your family all the best. May you find ways to keep each other strong in this difficult time, and may you always hold dear to your hearts everything that was special and beautiful about your daughter.
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Boris Simkovich - Name: Boris Simkovich
Founder
The Myeloma Beacon
Re: What do people with multiple myeloma die from?
Dear Terri
Condolences to your family at this sad time. Your daughter was blessed to have you as parents supporting and assisting all the way. Now you will I hope get the support of others you will need at a time of loss.
Best wishes
Edna
Condolences to your family at this sad time. Your daughter was blessed to have you as parents supporting and assisting all the way. Now you will I hope get the support of others you will need at a time of loss.
Best wishes
Edna