This week's question is about the age at which Beacon readers were first diagnosed with active multiple myeloma.
A few clarifications:
First, this question is only for readers who have multiple myeloma (sometimes referred to as active myeloma or symptomatic myeloma, but not smoldering myeloma or MGUS).
Second, if you are a caregiver or family member of someone who has myeloma, feel free to answer on their behalf
Third, we are interested in how old you were at that point in time when you received the definitive diagnosis that you have active myeloma.
As always, feel free to post comments, thoughts, or feedback in the space below. They can be very useful to other readers.
We ran this same poll about a year and a half ago, but we are running it again so that Beacon readers have access to the latest information and can compare it to the previous data.
2011 poll: How old were you when you were diagnosed with active (not smoldering) multiple myeloma?
https://myelomabeacon.org/forum/weekly-poll-age-at-diagnosis-for-active-multiple-myeloma-t708.html
We also previously ran similar polls for people with smoldering myeloma and MGUS.
How old were you when you were diagnosed with smoldering multiple myeloma?
https://myelomabeacon.org/forum/weekly-poll-age-at-diagnosis-for-smoldering-myeloma-t754.html
How old were you when you were diagnosed with monoclonal gammopathy of undetermined significance (MGUS)?
https://myelomabeacon.org/forum/weekly-poll-age-at-diagnosis-for-mgus-t1171.html
Forums
7 posts
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Re: Weekly Poll - Age At Diagnosis For Multiple Myeloma - 20
What the results tell me so far is that the age distribution of readers of this forum is probably 20 years younger than multiple myeloma patients as a whole, where the average age of diagnosis is 70,
What this also tell me is that most readers, being younger, probably tend to have much more agressive disease.
And what that tells me is that the complaints, side, effects, problems, and gloom and doom so frequently projected on this site also not a fair representation of what an average patient can expect.
And what that tells me is that is one does not want to be scared and freaked out, do NOT tale teh typical post here as representative.
What this also tell me is that most readers, being younger, probably tend to have much more agressive disease.
And what that tells me is that the complaints, side, effects, problems, and gloom and doom so frequently projected on this site also not a fair representation of what an average patient can expect.
And what that tells me is that is one does not want to be scared and freaked out, do NOT tale teh typical post here as representative.
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KFJ
Re: Weekly Poll - Age At Diagnosis For Multiple Myeloma - 20
KFJ, I reached the same conclusions as you. Plus, those older than 70 are definitely less likely to use the internet as a medical resource. I don't know about the scared and freaked out part, though. There are some younger posters who are quite upbeat and want to help others out. Also as far as those "scary" posts go, it could be that those for whom everything is going fine do not post! They are too busy just living their lives. So it may seem disproportionate.
BTW, I was diagnosed with multiple myeloma a few months back at age 58. I did answer the poll!
BTW, I was diagnosed with multiple myeloma a few months back at age 58. I did answer the poll!
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CathyS - Name: CathyS
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Feb. 2013
- Age at diagnosis: 58
Re: Weekly Poll - Age At Diagnosis For Multiple Myeloma - 20
I noticed 29 and younger was as low as the choices offered so I wanted to add that I was diagnosed at age 23 with the general consensus being that I had the disease for some time as there was already significant bone damage evident on my x-rays. That was 1994, and I had never heard of multiple myeloma and didn't yet have the Internet. I know I am very lucky and am extremely grateful to have survived this long and be doing reasonably well. I want other patients to know its possible. God bless my fellow cancer warriors and their caregivers.
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tara514
Re: Weekly Poll - Age At Diagnosis For Multiple Myeloma - 20
I'm thinking 70 year olds don't use the Internet as much. Most 70 and 80 year olds children are posting here. Most older people often don't question drs as much I'm thinking so there's no reason to research? Just a thought:)
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Motherof7
Re: Weekly Poll - Age At Diagnosis For Multiple Myeloma - 20
I'm thinking the same thing......I"m 63 and an internet/research junkie, but most of the folks alive when Steve Jobs was born aren't. The difference between my parents (who live with me) and me in regard to computer usage is huge--and my father has had his own 'personal computer' since the early sixties, when it was housed in it's own room at work...with a working memory that most modern calculators beat! Bless my dad and the way he raised me. 
I am constantly, however, having to re-teach my mother how to do her banking online, and she is NOT, in any way, a stupid woman.
Because of this, I was thinking that this poll had some problems; the population is self selecting. "Of those who actually use the internet and join support groups, what's the average age of diagnosis?" It's actually useful, if what you are studying is the use of internet resources with multiple myeloma patients, but not so much if you want to expand that any further.
I am constantly, however, having to re-teach my mother how to do her banking online, and she is NOT, in any way, a stupid woman.
Because of this, I was thinking that this poll had some problems; the population is self selecting. "Of those who actually use the internet and join support groups, what's the average age of diagnosis?" It's actually useful, if what you are studying is the use of internet resources with multiple myeloma patients, but not so much if you want to expand that any further.
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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: Weekly Poll - Age At Diagnosis For Multiple Myeloma - 20
Motherof7 wrote:
> I'm thinking 70 year olds don't use the Internet as much. Most 70 and 80
> year olds children are posting here. Most older people often don't question
> drs as much I'm thinking so there's no reason to research? Just a thought:)
I was diagnosed with Multiple Myeloma , January 2013, I am 71 years young. Do alot of research on the internet on my disease and alot of other topics. I don't think that age is a factor in research, I think it is what type of life you had pre diagnosis.
I probably read more that I should on the internet, I also ready lots of "Real Books" I try and support as many folks as possible. We are all in this "boat" together , not going to sink.
Keep fighting.
Kay
> I'm thinking 70 year olds don't use the Internet as much. Most 70 and 80
> year olds children are posting here. Most older people often don't question
> drs as much I'm thinking so there's no reason to research? Just a thought:)
I was diagnosed with Multiple Myeloma , January 2013, I am 71 years young. Do alot of research on the internet on my disease and alot of other topics. I don't think that age is a factor in research, I think it is what type of life you had pre diagnosis.
I probably read more that I should on the internet, I also ready lots of "Real Books" I try and support as many folks as possible. We are all in this "boat" together , not going to sink.
Keep fighting.
Kay
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kaywheeler
7 posts
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