I have had smoldering myeloma for 20 years and have never been treated to date and I guess to many who have myeloma that could be considered the best of the worst. I have read that my chances of the myeloma becoming active are at a low percentage. Today I went to my myeloma treatment center in New York and had some questions for my specialist.
1. Is smoldering myeloma considered myeloma, his answer was yes.
2. Is there a chance the Myeloma will never need to be treated and stay at this level?
On (1), the doctor said yes.
On (2), the doctor said no, eventually the myeloma will become more active and it will have to be treated. There is no cure at the present time.
What is the truth and the reality? Will it or will it not become active? I am 61 years old. My life has been on hold for 20 years. This illness has affected my life, relationships, and my career. I stay in a major city in case I need treatment instead of living a more adventurous life off the beaten path. My dad used to tell me I cried when I had no shoes till I met a man with no feet. I should be thankful, and I am. But I have no life because of my fear. This is not living.
I am sorry I do not write well. Thank you for reading.
God Bless
Forums
Re: Cannot take the uncertainty anymore
RagtopSL,
I am facing the same uncertainty. I'm 60 and, in contrast to your 20-year struggle, was diagnosed with smoldering myeloma just six months ago. There is not a day, sometimes not an hour, when I am not overwhelmed by the uncertainty that suddenly has engulfed my future.
I wish I could tell you that I've figured things out, but I haven't. I do see an oncologist who I have come quickly to respect. At my persistent urging for some sort of prognosis, she offered the view that I have a 25% chance of developing active myeloma over the next 3-5 years. This after full body x-rays, marrow testing, blood tests, etc. Now that I have the information, however, I don't know what to do with it.
Like you, I also have lifestyle questions. When I retire -- assuming I make it that far -- what will American health care look like? Will it vary by state? Will I be left not only sick but impoverished, draining money from my family? How bad will it be?
Maybe I should not be posting because I don't mean to compound your fears. I do, however, sympathize with you and can't imagine that you've suffered this way for 20 years. My thoughts are with you.
By the way, your writing is fine!
I am facing the same uncertainty. I'm 60 and, in contrast to your 20-year struggle, was diagnosed with smoldering myeloma just six months ago. There is not a day, sometimes not an hour, when I am not overwhelmed by the uncertainty that suddenly has engulfed my future.
I wish I could tell you that I've figured things out, but I haven't. I do see an oncologist who I have come quickly to respect. At my persistent urging for some sort of prognosis, she offered the view that I have a 25% chance of developing active myeloma over the next 3-5 years. This after full body x-rays, marrow testing, blood tests, etc. Now that I have the information, however, I don't know what to do with it.
Like you, I also have lifestyle questions. When I retire -- assuming I make it that far -- what will American health care look like? Will it vary by state? Will I be left not only sick but impoverished, draining money from my family? How bad will it be?
Maybe I should not be posting because I don't mean to compound your fears. I do, however, sympathize with you and can't imagine that you've suffered this way for 20 years. My thoughts are with you.
By the way, your writing is fine!
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Arthurg - Who do you know with myeloma?: That would be me.
- When were you/they diagnosed?: October 2010
- Age at diagnosis: 60
Re: Cannot take the uncertainty anymore
Good morning, Ragtop:
I gotta tell ya, you are one lucky guy, frankly. The simple fact is that if your myeloma had NOT been smoldering these past 20 years, you would by now almost certainly not be here. 20 years ago there was very little chance indeed of you lasting very long with active myeloma. So, for starters, rather than being scared and angry about a wasted life, I would like to suggest you change your mind and be very, very grateful indeed to whoever or whatever you believe in as a higher power, OK?
Having said that: your are lucky TWICE! The simple fact is that those of us who are for the past couple of years getting diagnosed with active multiple myeloma for the first time are probably the first group of myeloma patients who have a realistic opportunity of seeing an actual cure. And that isn't even a panic thing, because there are now so many options available to us as treatment that very many of us indeed will be here getting treated for 5, 10, 15+ years as the research continues. I am 56 years old, and was diagnosed this past January, and I have no doubt at all that I will live to be 75. None. (Or at least I am very confident it won't be multiple myeloma that gets me.)
I feel bad for you, actually. Life really is short, and it's a shame that you've spent so much time and energy 'waiting' for this cancer to finally do something to you. It just may never happen. There are no certainties in life, so just live one day at a time and enjoy each day to the max. What other good choice do you have? Besides.. Myeloma isn't a bus or a bullet, it doesn't kill instantly. Not even quickly. It's usually a very slow cancer, from what I understand. So from the time you go from smoldering to active multiple myeloma, you have years to deal with it.
Lose the fear, Ragtop. Multiple myeloma doesn't deserve it!
I gotta tell ya, you are one lucky guy, frankly. The simple fact is that if your myeloma had NOT been smoldering these past 20 years, you would by now almost certainly not be here. 20 years ago there was very little chance indeed of you lasting very long with active myeloma. So, for starters, rather than being scared and angry about a wasted life, I would like to suggest you change your mind and be very, very grateful indeed to whoever or whatever you believe in as a higher power, OK?
Having said that: your are lucky TWICE! The simple fact is that those of us who are for the past couple of years getting diagnosed with active multiple myeloma for the first time are probably the first group of myeloma patients who have a realistic opportunity of seeing an actual cure. And that isn't even a panic thing, because there are now so many options available to us as treatment that very many of us indeed will be here getting treated for 5, 10, 15+ years as the research continues. I am 56 years old, and was diagnosed this past January, and I have no doubt at all that I will live to be 75. None. (Or at least I am very confident it won't be multiple myeloma that gets me.)
I feel bad for you, actually. Life really is short, and it's a shame that you've spent so much time and energy 'waiting' for this cancer to finally do something to you. It just may never happen. There are no certainties in life, so just live one day at a time and enjoy each day to the max. What other good choice do you have? Besides.. Myeloma isn't a bus or a bullet, it doesn't kill instantly. Not even quickly. It's usually a very slow cancer, from what I understand. So from the time you go from smoldering to active multiple myeloma, you have years to deal with it.
Lose the fear, Ragtop. Multiple myeloma doesn't deserve it!
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Snip - Name: John Snippe
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Jan, 2011
- Age at diagnosis: 56
Re: Cannot take the uncertainty anymore
Thanks, Snip. I needed to hear that, too!
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Arthurg - Who do you know with myeloma?: That would be me.
- When were you/they diagnosed?: October 2010
- Age at diagnosis: 60
Re: Cannot take the uncertainty anymore
Hi RagtopSL,
As you mentioned in your original posting in this thread, basically all the studies that have been done on this subject indicate that, if you haven't progressed to active multiple myeloma after 20 years of having smoldering myeloma, the chance that any given year you'll progress to active myeloma is pretty low. I think the estimates are around 1 percent per year.
However, even if it is only 1 percent per year, that means if you live another 25 years, there is a one in four chance (25 percent) that during that time you'll develop active myeloma.
Also, your doctor may have experience that, to him, indicates that smoldering myeloma patients who have been diagnosed as long as you are, and are your age, actually have a higher than one percent chance per year of progressing to active disease.
He also may know specifics of your case that you may not feel are important, but affect his opinion and lead him to say that you'll probably develop active disease at some point.
Perhaps you can tell us more about what your doctor told you, and about the specifics of your case, before we try giving you advice on what you should do. I know I'm tempted to say "Get on with your life and, if the myeloma progresses, just be prepared to deal with it; but don't keep putting your life on hold." However, I think I'd feel better -- and others probably would feel better -- saying something like that if we knew a bit more about your situation.
That said, I agree with John -- the prognosis now for myeloma patients is better than it's ever been. Not only are the existing treatments quite good, but there are many additional ones that are likely to be approved by the FDA within the next few years.
For some of the Beacon's latest reporting on smoldering myeloma, see this forum posting which summarizes an education session at the recent ASCO meeting that focused on smoldering myeloma:
https://myelomabeacon.org/forum/post1748.html#p1748
That posting also links to a detailed summary of a recent debate about treating smoldering myeloma patients that took place at the International Myeloma Workshop at the beginning of May.
Good luck!
- Boris.
As you mentioned in your original posting in this thread, basically all the studies that have been done on this subject indicate that, if you haven't progressed to active multiple myeloma after 20 years of having smoldering myeloma, the chance that any given year you'll progress to active myeloma is pretty low. I think the estimates are around 1 percent per year.
However, even if it is only 1 percent per year, that means if you live another 25 years, there is a one in four chance (25 percent) that during that time you'll develop active myeloma.
Also, your doctor may have experience that, to him, indicates that smoldering myeloma patients who have been diagnosed as long as you are, and are your age, actually have a higher than one percent chance per year of progressing to active disease.
He also may know specifics of your case that you may not feel are important, but affect his opinion and lead him to say that you'll probably develop active disease at some point.
Perhaps you can tell us more about what your doctor told you, and about the specifics of your case, before we try giving you advice on what you should do. I know I'm tempted to say "Get on with your life and, if the myeloma progresses, just be prepared to deal with it; but don't keep putting your life on hold." However, I think I'd feel better -- and others probably would feel better -- saying something like that if we knew a bit more about your situation.
That said, I agree with John -- the prognosis now for myeloma patients is better than it's ever been. Not only are the existing treatments quite good, but there are many additional ones that are likely to be approved by the FDA within the next few years.
For some of the Beacon's latest reporting on smoldering myeloma, see this forum posting which summarizes an education session at the recent ASCO meeting that focused on smoldering myeloma:
https://myelomabeacon.org/forum/post1748.html#p1748
That posting also links to a detailed summary of a recent debate about treating smoldering myeloma patients that took place at the International Myeloma Workshop at the beginning of May.
Good luck!
- Boris.
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Boris Simkovich - Name: Boris Simkovich
Founder
The Myeloma Beacon
Re: Cannot take the uncertainty anymore
My dear wife gave me a wee reprimand for my post above. She thinks I was harsh and could have been a bit more encouraging. I take Beloved really rather seriously most of the time, so I am sure she's right. Sorry about that.
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Snip - Name: John Snippe
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Jan, 2011
- Age at diagnosis: 56
Re: Cannot take the uncertainty anymore
Your mentioning staying in a large city area caught my eye. I live in the far north of the Upper Peninsula of Michigan, where we have 300 inches of snow almost every winter. I have been under treatment for multiple myeloma since May, 2008, and have had wonderful care, right here within 15 minutes of my house. I have a doctor at the Mayo Clinic also, where I had my stem cell transplant; and I had surgery on a broken vertebrae in Marquette, Michigan, about 2 1/2 hours away. But I get all my infusions, check ups, x-rays, blood work right here where I live.
You'd be surprised at the wonderful medical care you can get in the most seemingly remote places.
All of us with multiple myeloma or smoldering myeloma can really identify with you. We all know worry, regret, anger, etc. But fussing changes nothing, and, in fact, makes us worse. So, relax, do what your doctor recommends, and keep healthy (exercise, food, sleep). When you feel that "I can't take it anymore" feeling: give it a big raspberry -- and go treat yourself!
Good luck, and God bless you.
Julia
You'd be surprised at the wonderful medical care you can get in the most seemingly remote places.
All of us with multiple myeloma or smoldering myeloma can really identify with you. We all know worry, regret, anger, etc. But fussing changes nothing, and, in fact, makes us worse. So, relax, do what your doctor recommends, and keep healthy (exercise, food, sleep). When you feel that "I can't take it anymore" feeling: give it a big raspberry -- and go treat yourself!
Good luck, and God bless you.
Julia
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Jubyanne - Name: Julia Munson
- Who do you know with myeloma?: myself, son's mother-in-law
- When were you/they diagnosed?: Spring 2008
- Age at diagnosis: 65
Re: Cannot take the uncertainty anymore
Hello,
I think your questions about smoldering myeloma are important and should be answered definitively. My responses are below.
1. Is smoldering myeloma considered Myeloma ?
From my perspective, no. Generally the term myeloma is used when referring to a patient whose disease requires treatment.
To quote from an important review article written in the New England Journal of Medicine in 2007, "Smoldering (asymptomatic) multiple myeloma is an asymptomatic plasma-cell proliferative disorder associated with a high risk of progression to symptomatic multiple myeloma or amyloidosis."
2, Is there a chance the myeloma will never need to be treated and stay at this leve ?
Yes. The same article reported on 276 patients with smoldering (or asymptomatic myeloma) followed over a 26-year period at the Mayo Clinic. Symptomatic multiple myeloma or amyloidosis developed in 163 persons (59%) over the 26 year study period. The overall risk of progression to symptomatic myeloma was 10% per year for the first 5 years, approximately 3% per year for the next 5 years, and 1% per year for the last 10 years.
There are several factors that can help to predict a patient's prognosis for developing symptomatic multiple myeloma, including serum free light chain levels, serum level and type of monoclonal protein, the presence of urinary light chain, the extent and pattern of bone marrow involvement, and reduction in uninvolved immunoglobulins.Given how long you have gone without progression your disease is behaving more like MGUS, which has a much better prognosis and a lower chance for developing into myeloma.
I think your questions about smoldering myeloma are important and should be answered definitively. My responses are below.
1. Is smoldering myeloma considered Myeloma ?
From my perspective, no. Generally the term myeloma is used when referring to a patient whose disease requires treatment.
To quote from an important review article written in the New England Journal of Medicine in 2007, "Smoldering (asymptomatic) multiple myeloma is an asymptomatic plasma-cell proliferative disorder associated with a high risk of progression to symptomatic multiple myeloma or amyloidosis."
2, Is there a chance the myeloma will never need to be treated and stay at this leve ?
Yes. The same article reported on 276 patients with smoldering (or asymptomatic myeloma) followed over a 26-year period at the Mayo Clinic. Symptomatic multiple myeloma or amyloidosis developed in 163 persons (59%) over the 26 year study period. The overall risk of progression to symptomatic myeloma was 10% per year for the first 5 years, approximately 3% per year for the next 5 years, and 1% per year for the last 10 years.
There are several factors that can help to predict a patient's prognosis for developing symptomatic multiple myeloma, including serum free light chain levels, serum level and type of monoclonal protein, the presence of urinary light chain, the extent and pattern of bone marrow involvement, and reduction in uninvolved immunoglobulins.Given how long you have gone without progression your disease is behaving more like MGUS, which has a much better prognosis and a lower chance for developing into myeloma.
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: Cannot take the uncertainty anymore
First time on this site and your post I found quite interesting and it certainly "hit home"! I have had smoldering myeloma since 2005. I agree that the uncertainty is constantly on my mind and you hit it on the head "cannot take it anymore"! I am a 61 year old female and have an IgA spike with no light chains.Thus far I have been blessed with no treatment. Every time I get a backache, which is often I panic. So I surely sympathize with you.
Take care!
Take care!
Re: Cannot take the uncertainty anymore
I am still stable needing no treatment with smoldering myeloma, so blessed I have an IgA spike. Diagnosed in 2005. Be well and God Bless!
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