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Re: Life Expectancy
Hi my name is Sheila, I was told in August of 2012 thaat I have Multiple Myeloma cancer . I would like to know what to expect from someone that has it too. I am going through Chemo treatment now. How long do I have to live.
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Anonymous
Re: Life Expectancy
Sheila,
Welcome to the forum. You are among people going through the same journey. Take time to read the posts on this topic. I think it will answer many of your questions. I personally was diagnosed with Stage II multiple myeloma about 4 years ago and have been in remission for 3 1/2 years and counting. About 10 years ago, before the use of novel agents, my life expectancy was less than 4 years. Now people have survived 10-15 years and more. Things are changing, new treatments have been introduced and new drugs are being approved to fight this disease.
You are among friends here.
Ron
Welcome to the forum. You are among people going through the same journey. Take time to read the posts on this topic. I think it will answer many of your questions. I personally was diagnosed with Stage II multiple myeloma about 4 years ago and have been in remission for 3 1/2 years and counting. About 10 years ago, before the use of novel agents, my life expectancy was less than 4 years. Now people have survived 10-15 years and more. Things are changing, new treatments have been introduced and new drugs are being approved to fight this disease.
You are among friends here.
Ron
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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: Life Expectancy
Hey I read your post. My mom past away with the same thing you were diagnosisd with but it was late stage. It's treatable not curable unless God cures it. Every 5 years you have to get a stem cell transplant using cells from one of your siblings with same type procedure cost 120000
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dochelpforgod
Re: Life Expectancy
Please do not pay any attention to what dochelpforgod said. They are incorrect on essentially everything that they wrote.
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rumnting - Who do you know with myeloma?: husband
- When were you/they diagnosed?: 4/9/11
- Age at diagnosis: 54
Re: Life Expectancy
My mum was diagnosed with multiple myeloma in 1999.
Well, its now 2013 and she is doing so well!
Yes, it's not curable at present, but it does seem manageable.
My mum is someone who would always keep any bad news to herself not to worry others and it was only with the growth of the internet that I came across the terrible statistics of average life expectancy of 4 years etc.. after diagnosis etc.. Well, 14 years later I am pleased that you do not need to believe all you read on the web and I hope with a positive mindset and of course with any recommended treatments, youy can continue to live a long, normal and active life!
Well, its now 2013 and she is doing so well!
Yes, it's not curable at present, but it does seem manageable.
My mum is someone who would always keep any bad news to herself not to worry others and it was only with the growth of the internet that I came across the terrible statistics of average life expectancy of 4 years etc.. after diagnosis etc.. Well, 14 years later I am pleased that you do not need to believe all you read on the web and I hope with a positive mindset and of course with any recommended treatments, youy can continue to live a long, normal and active life!
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A proud son
Re: Life Expectancy
rumnting wrote:
Please do not pay any attention to what dochelpforgod said. They are incorrect on essentially everything that they wrote.
(end quote)
x2
New treatments are coming consistently now and no one can give a life expectancy at diagnosis other than a avergae based on past treatments. There are many who have survived many years and it seems that list is increasing. I'm 4 1/2 years away from a Bence Jones diagnoses and still in remission.
Please do not pay any attention to what dochelpforgod said. They are incorrect on essentially everything that they wrote.
(end quote)
x2
New treatments are coming consistently now and no one can give a life expectancy at diagnosis other than a avergae based on past treatments. There are many who have survived many years and it seems that list is increasing. I'm 4 1/2 years away from a Bence Jones diagnoses and still in remission.
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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: Life Expectancy
To me, the answer that overall survival is an individual phenomenon and depends on various factors, while true, is sugared with wishful thinking. A young patient needs to know the current, and I repeat the current (rvd protocol) survival statistics. Those to the best of my knowledge are 5 years median survival with the caveat in Dr. Ken Shain's post on this thread (i.e. hopefully around 6 to 8 years). I think it is prudent to use this as a guideline for setting your life in order. I was diagnosed when I was 37 with Stage 3, 80% bone involvement. Now I am 39. So far, I am in CR and I live my life mostly as if I am not sick of a terminal disease. However, state of mind, exercising, eating, going to work, fighting through side effects, does not change the reality of it, which is 5 years, maybe 6-8 years. That said, statistics is statistic and only a representation of averages and medians. As far as I know, I can live 20 years or 2 years. Nobody knows (I would not mention God, not being a religious man). However, convincing a Stage 3, 30-40 year old patients that they will live, say another 30 years, while maybe noble and moral, may not necessarily be the best thing for that patient.
So what's the bottom line? If you are young and diagnosed with multiple myeloma, you may want to live your life fully to the best of your abilities. Spend time with family, go ride that motorcycle; go on that cross-country trip or whatever rocks your boat. You don't want to be in a position where you planned to live another 20 years and one sunny day your doc tells you that your M spike is creeping up and you are looking down the barrel of a stage 3 experimental study down at Sloan Kettering.
Good luck to everyone.
So what's the bottom line? If you are young and diagnosed with multiple myeloma, you may want to live your life fully to the best of your abilities. Spend time with family, go ride that motorcycle; go on that cross-country trip or whatever rocks your boat. You don't want to be in a position where you planned to live another 20 years and one sunny day your doc tells you that your M spike is creeping up and you are looking down the barrel of a stage 3 experimental study down at Sloan Kettering.
Good luck to everyone.
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ivanm - Name: Ivan Mitev
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August, 2011
- Age at diagnosis: 37
Re: Life Expectancy
Sheila, the average life expectancy that is published by the National Cancer Institute (SEER) is 4 years, but the data is for 2005 and a lot has happened in treatment in the last 8 years. In addition, I have found that there are a lot of factors that will impact life expectancy. The first of which is that a Multiple Myeloma specialist like, Barlogie, Berenson, Rajkumar, Richardson, Orlowski, Hari or one of the other 70 or so top myeloma professionals have life expediencies that are 1.5 to 3 times longer than the average. So you need to get one of them on your team if possible. Just a second opinion and their plan would be great, that could be followed by a local hematologist/oncologist would be good fall back position.
Another factor is if you are considered high risk or low risk disease. If you are low risk disease your prognosis is much better. If high risk I believe it is no more than 2 years. If you are lucky enough to be smoldering you may not progress to full blown multiple myeloma for decades. If you are a younger patient like Ivanm you have a better prognosis. People under 48 have twice the life expectancy of those patients who are at the average age of most patients which is 70.
Sheila, you are doing the right thing, and that is to educate yourself about multiple myeloma and be your own best advocate, make your own doctor and treatment selection, and unfortunately sort through old and new data, good data and bad data. God Bless your myeloma journy or just Good Luck if you don't believe.
Another factor is if you are considered high risk or low risk disease. If you are low risk disease your prognosis is much better. If high risk I believe it is no more than 2 years. If you are lucky enough to be smoldering you may not progress to full blown multiple myeloma for decades. If you are a younger patient like Ivanm you have a better prognosis. People under 48 have twice the life expectancy of those patients who are at the average age of most patients which is 70.
Sheila, you are doing the right thing, and that is to educate yourself about multiple myeloma and be your own best advocate, make your own doctor and treatment selection, and unfortunately sort through old and new data, good data and bad data. God Bless your myeloma journy or just Good Luck if you don't believe.
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Gary Petersen
Re: Life Expectancy
I'm glad I didn't have access to this type of information when I was originally diagnosed in 1995. I probably would have freaked out! 
I had about six months of treatment then and it had been smoldering until recently when it decided to rear its ugly head. (About 25 yo at diagnosis and I'm 45 now) I just began chemo yesterday and one of the first things she said is that the treatments are so much more effective now. I expect to have, at minimum, 20 more years.
I had about six months of treatment then and it had been smoldering until recently when it decided to rear its ugly head. (About 25 yo at diagnosis and I'm 45 now) I just began chemo yesterday and one of the first things she said is that the treatments are so much more effective now. I expect to have, at minimum, 20 more years.-
RedWriter