So in the realm of things, is multiple myeloma considered fatal such as something like pancreatic cancer, or do you have a better chance of dying from something else?
I understand the amount of survivors living with it 10+ years has increased dramatically, but still, it's something I have to ask.
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Re: So in the end, is multiple myeloma considered fatal?
Guest1 wrote:
> So in the realm of things, is multiple myeloma considered fatal such as
> something like pancreatic cancer, or do you have a better chance of dying
> from something else?
>
> I understand the amount of survivors living with it 10+ years has increased
> dramatically, but still, it's something I have to ask.
I have been told...repeatedly...that it's "incurable." Certainly my doc is willing to write the paperwork to get my student loans waived (at least for a time).
On the other hand, being born is fatal; that is, none of us are getting out of here alive. I figure that I have as much chance of getting run over by a bus today as I did yesterday, and as much chance of being struck by lightning while being eaten by a shark as I have of getting married again.
....................and both things are more likely to happen in the next month than my dying of multiple myeloma within the next year or so,
So I guess someone needs to define 'fatal' and 'incurable' and let us all know what the difference is.
> So in the realm of things, is multiple myeloma considered fatal such as
> something like pancreatic cancer, or do you have a better chance of dying
> from something else?
>
> I understand the amount of survivors living with it 10+ years has increased
> dramatically, but still, it's something I have to ask.
I have been told...repeatedly...that it's "incurable." Certainly my doc is willing to write the paperwork to get my student loans waived (at least for a time).
On the other hand, being born is fatal; that is, none of us are getting out of here alive. I figure that I have as much chance of getting run over by a bus today as I did yesterday, and as much chance of being struck by lightning while being eaten by a shark as I have of getting married again.
....................and both things are more likely to happen in the next month than my dying of multiple myeloma within the next year or so,
So I guess someone needs to define 'fatal' and 'incurable' and let us all know what the difference is.
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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: So in the end, is multiple myeloma considered fatal?
A generally accepted cure is not here yet - but the leading experts truly feel it is close, given the slew of drugs that have been approved, the new ones nearing approval, and still other novel ones advancing in trials.
Although controversial, total therapy a-la-Barlogie does appear to cure a significant fraction of low-risk patients.
And allogenic stem cell transplantation - not without its fatal and high-risk pitfalls - also appears to cure certain patient.
Squeezing rosary beads sadly does not cure.
Although controversial, total therapy a-la-Barlogie does appear to cure a significant fraction of low-risk patients.
And allogenic stem cell transplantation - not without its fatal and high-risk pitfalls - also appears to cure certain patient.
Squeezing rosary beads sadly does not cure.
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DM Wallking
Re: So in the end, is multiple myeloma considered fatal?
I was diagnosed 4 years ago and all I could think was..... "While everybody is going about their merry lives, I'm dying". I even decided to not buy any more new clothes, since I was sure I'd die pretty soon and it would just be a waste of money.
Since then, I have been to the funeral of a 48 year old friend who was diagnosed with ovarian cancer and died 9 months later, a funeral of an 19 year old boy who died in a car wreck. And have friends who have gone to funerals of 2 other young men who died in car wrecks. Our tenants ex wife was killed 2 weeks ago in a car wreck. My niece had a miscarriage. My father passed away earlier this year.
The lesson I've learned is to not get caught up in the dying part too much, since something else could get you while you're thinking of myeloma.
I still wear my seat belt and don't text and drive. And I turned 50 this year, so I'm thinking of getting a colonoscopy. That is my reward!! Ha.
Since then, I have been to the funeral of a 48 year old friend who was diagnosed with ovarian cancer and died 9 months later, a funeral of an 19 year old boy who died in a car wreck. And have friends who have gone to funerals of 2 other young men who died in car wrecks. Our tenants ex wife was killed 2 weeks ago in a car wreck. My niece had a miscarriage. My father passed away earlier this year.
The lesson I've learned is to not get caught up in the dying part too much, since something else could get you while you're thinking of myeloma.
I still wear my seat belt and don't text and drive. And I turned 50 this year, so I'm thinking of getting a colonoscopy. That is my reward!! Ha.
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Stann
Re: So in the end, is multiple myeloma considered fatal?
Is myeloma fatal? Well in Australia for insurance purposes at the moment it is considered a terminal cancer. However how long is a piece of string. I keep on surprising my specialists by still being here. I attribute this to the allo I had two years ago. At the moment I am at an airport going to my 30 year school reunion and enjoying life.
All the best,
Libby
All the best,
Libby
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: So in the end, is multiple myeloma considered fatal?
I'm only 90 days into my 'discovery' of having Multiple Myeloma and this thread has given me just a little bit more hope, today, that all is not lost, yet. Thanks. 
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tropicdiver - Name: Bob Phillips
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: So in the end, is multiple myeloma considered fatal?
Multiple Myeloma is, for most people who have it, still a fatal disease. But it can take a long time to get you and you can be in remission or stable disease for many years and live a relatively normal life during those years. Multiple Myeloma varies greatly from one patient to another. A lot your chance for survival depends on the relative virulence of your particular disease. Doctors are learning about this more all the time and starting to tailor treatment. A lot of your quality of life depends on how much damage the disease managed to cause before diagnosis and treatment. As someone else posted, no one gets out of here alive. With Multiple Myeloma these days, you do stand a pretty decent chance of dying of something else first. But it is still fatal enough, that you should live every year as a precious gift. And that isn't a bad way to live.
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JanInWloo - When were you/they diagnosed?: 2005
- Age at diagnosis: 51
Re: So in the end, is multiple myeloma considered fatal?
Is myeloma a terminal malignancy?
To me, this post is very patient and caregiver oriented, but I wanted to try and put terminal in perspective- at least from my prospective.
It is a very important question and one that we strive everyday to change the answer. For now, multiple myeloma remains a mortal disease - but with significant expectations of response and maintenance of response with meaningful quality of life.
As other posts have commented, we have made great strides in the past several decades to improve long term outcomes for most (but not all) of our patients. This has included the utilization of high-dose melphalan and autologous stem cell transplant (allo or donor transplant in some cases), the development of bortezomib [Velcade] (and now continuing generations of proteasome inhibitors: carfilzomib [Kyprolis], oprozomib, ixazomib, and marizomib) and thalidomide (more recently lenalidomide [Revlimid] and pomalidomide), "new" novel agents (HDAC inhibitors, TKIs) & antibodies with associated clinical trials and importantly supportive care throughout the process of therapy. This also includes patient education and autonomy - forums such as this where ideas and experiences can be shared.
Also critical to this is the appropriate sequencing of therapy (for appropriate individuals)- induction/primary therapy, consolidation/ transplant, and more recently maintenance therapy. The concept of consolidative therapy after transplant is also gaining momentum.
We are continuing to push the survival curve to the right (improving) for most of our patients. We continue to define new aspects of disease biology and therapy.
Today, for some patients myeloma can be considered a chronic disease with meaningful quality of life. However, continued work needs to be done, because this is not the case for all of our patients.
To me, this post is very patient and caregiver oriented, but I wanted to try and put terminal in perspective- at least from my prospective.
It is a very important question and one that we strive everyday to change the answer. For now, multiple myeloma remains a mortal disease - but with significant expectations of response and maintenance of response with meaningful quality of life.
As other posts have commented, we have made great strides in the past several decades to improve long term outcomes for most (but not all) of our patients. This has included the utilization of high-dose melphalan and autologous stem cell transplant (allo or donor transplant in some cases), the development of bortezomib [Velcade] (and now continuing generations of proteasome inhibitors: carfilzomib [Kyprolis], oprozomib, ixazomib, and marizomib) and thalidomide (more recently lenalidomide [Revlimid] and pomalidomide), "new" novel agents (HDAC inhibitors, TKIs) & antibodies with associated clinical trials and importantly supportive care throughout the process of therapy. This also includes patient education and autonomy - forums such as this where ideas and experiences can be shared.
Also critical to this is the appropriate sequencing of therapy (for appropriate individuals)- induction/primary therapy, consolidation/ transplant, and more recently maintenance therapy. The concept of consolidative therapy after transplant is also gaining momentum.
We are continuing to push the survival curve to the right (improving) for most of our patients. We continue to define new aspects of disease biology and therapy.
Today, for some patients myeloma can be considered a chronic disease with meaningful quality of life. However, continued work needs to be done, because this is not the case for all of our patients.
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
Re: So in the end, is multiple myeloma considered fatal?
The bottom line is that everything is fatal - life is fatal - and spending every day dwelling on that fact is not healthy. You go out and live your life and hope for the best. It's been over 19 years since I was diagnosed with multiple myeloma and I can assure you that I have no plans to die any time soon. Although I know this disease could ultimately kill me at some point, I do not spend my time worrying about that because it wont do any good anyway. I focus on gratitude for what I have and for the fact that I am even alive rather than worrying about what I lost, how my life changed, and the whole 'why me' attitude. Life is short, shorter for some that others, and none of us knows what will happen. Hope is important. Live your life so you don't have a lot of regrets when you each the end, whether its in a few months or a few decades.
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tara51494
Re: So in the end, is multiple myeloma considered fatal?
I like to contribute a bit of hope whenever these opportunities come my way. When I was diagnosed in 2003, the phrase "terminal illness" was still tossed about. These days there is more politically-correct language (chronic disease). Ten years ago, I was led to believe that my stage IV Multiple Myeloma would be fatal--within a year, two, or three. My ASCT was in 2004 and I certainly felt like I was dying for awhile, but curiously, I've been in remission ever since I recovered from that. At this point, my doctor risks saying "It's unlikely that the myeloma will return after all this time." Life will be fatal (someday), but so far, myeloma has not been the terminal disease I once feared.
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BuffaloPat - Name: Pat
- When were you/they diagnosed?: 2003
- Age at diagnosis: 51
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