Maybe the Beacon should have a weekly poll: How many people do you know with multiple myeloma? I know of 8 not including myself, who live in my community!
Rhonda
Forums
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Rhonda - Who do you know with myeloma?: myself
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 54
Re: How "rare" is multiple myeloma really?
Some Canadian stats about the prevalence of multiple myeloma....
Multiple myeloma statistics
To provide the most current cancer statistics, researchers use statistical methods to estimate the number of new cancer cases and deaths until actual data become available.
Incidence and mortality
These are Canadian statistics from the Canadian Cancer Society (relevant page at the Society's website). Canada has a population of approx. 33 million people. So I calculate that less than 0.01% of people would be diagnosed with multiple myeloma per year. Hope my math is correct! I think that myeloma is still quite a rare cancer. This makes a difference as to whether it is considered to be an 'orphan' disease in the US. In Canada hopefully some legislation will be considered to help people with 'rare' diseases to get the funding needed to develop expensive drugs with a limited amount of sales. For example, a drug for diabetes would have a far wider application than a medication for a small population such as patients with myeloma. i think that is why these sorts of stats are important for funding of development for new drugs.
Incidence is the total number of new cases of cancer. Mortality is the number of deaths due to cancer.
It is estimated that in 2015:
2,700 Canadians will be diagnosed with multiple myeloma.
1,400 Canadians will die from multiple myeloma.
1,500 men will be diagnosed with multiple myeloma and 740 will die from it.
1,150 women will be diagnosed with multiple myeloma and 640 will die from it.
Chances (probability) of developing or dying from multiple myeloma:
Based on 2010 estimates:
About 1 in 118 Canadian men is expected to develop multiple myeloma during his lifetime and 1 in 195 will die from it.
About 1 in 143 Canadian women is expected to develop multiple myeloma during her lifetime and 1 in 239 will die from it.
Multiple myeloma statistics
To provide the most current cancer statistics, researchers use statistical methods to estimate the number of new cancer cases and deaths until actual data become available.
Incidence and mortality
These are Canadian statistics from the Canadian Cancer Society (relevant page at the Society's website). Canada has a population of approx. 33 million people. So I calculate that less than 0.01% of people would be diagnosed with multiple myeloma per year. Hope my math is correct! I think that myeloma is still quite a rare cancer. This makes a difference as to whether it is considered to be an 'orphan' disease in the US. In Canada hopefully some legislation will be considered to help people with 'rare' diseases to get the funding needed to develop expensive drugs with a limited amount of sales. For example, a drug for diabetes would have a far wider application than a medication for a small population such as patients with myeloma. i think that is why these sorts of stats are important for funding of development for new drugs.
Incidence is the total number of new cases of cancer. Mortality is the number of deaths due to cancer.
It is estimated that in 2015:
2,700 Canadians will be diagnosed with multiple myeloma.
1,400 Canadians will die from multiple myeloma.
1,500 men will be diagnosed with multiple myeloma and 740 will die from it.
1,150 women will be diagnosed with multiple myeloma and 640 will die from it.
Chances (probability) of developing or dying from multiple myeloma:
Based on 2010 estimates:
About 1 in 118 Canadian men is expected to develop multiple myeloma during his lifetime and 1 in 195 will die from it.
About 1 in 143 Canadian women is expected to develop multiple myeloma during her lifetime and 1 in 239 will die from it.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: How "rare" is multiple myeloma really?
Hi Ron,
You're pretty astute! I was thinking the same thing about the relationship between new cases per year (30,000) and total people living with myeloma in the US (90,000). I almost raised that question in my earlier post, but decided my post was long enough as it was.
I honestly don't know what to make of those two numbers. As you said, it does seem like the total number of people living with myeloma should be higher if we assume something like a 7-year overall survival on average.
Hi Nancy,
Thanks for the Canadian data. That's interesting too. And it looks like the chance of a Canadian getting myeloma is roughly the same as that of an American getting it, which we would expect.
Mike
You're pretty astute! I was thinking the same thing about the relationship between new cases per year (30,000) and total people living with myeloma in the US (90,000). I almost raised that question in my earlier post, but decided my post was long enough as it was.
I honestly don't know what to make of those two numbers. As you said, it does seem like the total number of people living with myeloma should be higher if we assume something like a 7-year overall survival on average.
Hi Nancy,
Thanks for the Canadian data. That's interesting too. And it looks like the chance of a Canadian getting myeloma is roughly the same as that of an American getting it, which we would expect.
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: How "rare" is multiple myeloma really?
Hi Mike,
Probably the incidences of getting myeloma would be similar in many countries. There is a distinction between 'incidence' and 'prevalence' which can be confusing too. 'Incidence' is the rate of new diagnoses, but 'prevalence' is the total number of patients who have the disease. So the 'prevalence' should be increasing, as treatments improve and survival is longer. (Less people per year would be dying from myeloma, thankfully.)
This is a gloomy topic, but can be useful for purposes of advocacy. Being a 'rare' disease means that there may be more government funding available for research and development of new drugs. In Canada, an organization called CORD (Canadian Organization for Rare Disorders) is lobbying to get legislation for that. There are over 7000 rare diseases, of which myeloma is one.
Fortunately, several new treatments for myeloma have been approved or are being considered now! We do have a fairly effective lobbying process here, which many patients and support groups get involved with. I decided that it was a good area of volunteering to do. Not many people have myeloma, so those of us who do have it could try to make a difference that way.
Thanks for bringing up the topic on this thread, everyone.
Probably the incidences of getting myeloma would be similar in many countries. There is a distinction between 'incidence' and 'prevalence' which can be confusing too. 'Incidence' is the rate of new diagnoses, but 'prevalence' is the total number of patients who have the disease. So the 'prevalence' should be increasing, as treatments improve and survival is longer. (Less people per year would be dying from myeloma, thankfully.)
This is a gloomy topic, but can be useful for purposes of advocacy. Being a 'rare' disease means that there may be more government funding available for research and development of new drugs. In Canada, an organization called CORD (Canadian Organization for Rare Disorders) is lobbying to get legislation for that. There are over 7000 rare diseases, of which myeloma is one.
Fortunately, several new treatments for myeloma have been approved or are being considered now! We do have a fairly effective lobbying process here, which many patients and support groups get involved with. I decided that it was a good area of volunteering to do. Not many people have myeloma, so those of us who do have it could try to make a difference that way.
Thanks for bringing up the topic on this thread, everyone.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: How "rare" is multiple myeloma really?
Wow. This has been a really interesting thread. I honestly didn't know where it was going and I hadn't studied any of the statistics. I was just amazed that I discovered two people in two days in my circle who also had multiple myeloma.
The research and funding aspect is very interesting and not something I knew about.
Thanks to everyone who has chimed in on this.
The research and funding aspect is very interesting and not something I knew about.
Thanks to everyone who has chimed in on this.
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Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
Re: How "rare" is multiple myeloma really?
Before I was diagnosed, a friend had gone through a stem cell transplant, so I knew about myeloma. Also was aware of another friend's husband passing away from it. Then, in the same year (2009), another friend was diagnosed. It all seemed a strange coincidence at the time. Since then, over about 7 years, I have met many people in person with multiple myeloma, through my support group, and also online through the Beacon.
We patients tend to think that it is still a relatively 'unknown' disease though. If you tell people about myeloma, they usually haven't heard of it by that name. If you spell it out and say 'bone marrow cancer', people can understand that terminology.
We patients tend to think that it is still a relatively 'unknown' disease though. If you tell people about myeloma, they usually haven't heard of it by that name. If you spell it out and say 'bone marrow cancer', people can understand that terminology.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: How "rare" is multiple myeloma really?
I find this level of interest in this thread interesting and, forgive me, somewhat amusing. Every once in a while somewhere along the way I get corrected. At one point, I posted that multiple myeloma was a "relatively" rare cancer. I am quite sure that I got that from the pamphlet that they gave when my wife first got diagnosed, but it was a point of contention on the forum. I also got corrected when I noted (which I read in the same pamphlet) that multiple myeloma was the second most frequent blood cancer. Lymphoma, in addition to leukemia, I understand is more frequent than multiple myeloma. Some people, including medical professionals, appear to categorize lymphoma as not a blood cancer (even though it's treated similarly). So I guess I realized that this was a hot topic already. In any case, the distinction to me is more semantical, as blueblood called out.
Here is my argument, however, for the "rare" or relatively rare side. It is true (and unfortunate) that there is a vibrant community of patients, caregivers, hospitals, doctors, and researchers with a certain critical mass. Myeloma, however, as some doctors and researches have stated, is arguably dozens of diseases (flavors, if you will). Although in the US 30,000 newly diagnosed is a goodly amount (and maybe by now 150,000+ patients, guessing some updated numbers per Ron's and Mike's discussion), the greatest need to advance the disease and make it truly a chronic condition is to figure out what to do with some of the bad prognostic factors. Overall, high and intermediate risk factors are something like 35%. Individual risk factors, however, are down somewhere in the 5% to 10% range each. If you have one, say for example t(4,14) (intermediate risk), then the number of newly diagnosed patients per year is something like 2,000 per year in the US, overall. Phase 1 and 2 clinical trials for hopefully better and targeted treatments, are usually done in a single center, and have in the range of 30 to 100 patients enrolled. It is very difficult, or impossible, to get a targeted clinical trial in one hospital (center) done for newly diagnosed multiple myeloma on a targeted high risk factor. Maybe not impossible for a large center in a multi-year trial, but very very difficult. This is generally true of all of the individual cytogenetic abnormalities. They do get studied, but sort of as a sidebar to larger studies. You do see studies for high risk, and I think those are useful and helpful, but they have to lump in all of the high risk factors together to get the numbers in the study. So in one of the greatest needs to advance the state of the art, the incidence of specific high risk patients are not enough to get a good phase 1 or 2 clinical trial done (in most cases). That is why, among other reasons, that I think the "rare' tag is a fair one. Regards,
Here is my argument, however, for the "rare" or relatively rare side. It is true (and unfortunate) that there is a vibrant community of patients, caregivers, hospitals, doctors, and researchers with a certain critical mass. Myeloma, however, as some doctors and researches have stated, is arguably dozens of diseases (flavors, if you will). Although in the US 30,000 newly diagnosed is a goodly amount (and maybe by now 150,000+ patients, guessing some updated numbers per Ron's and Mike's discussion), the greatest need to advance the disease and make it truly a chronic condition is to figure out what to do with some of the bad prognostic factors. Overall, high and intermediate risk factors are something like 35%. Individual risk factors, however, are down somewhere in the 5% to 10% range each. If you have one, say for example t(4,14) (intermediate risk), then the number of newly diagnosed patients per year is something like 2,000 per year in the US, overall. Phase 1 and 2 clinical trials for hopefully better and targeted treatments, are usually done in a single center, and have in the range of 30 to 100 patients enrolled. It is very difficult, or impossible, to get a targeted clinical trial in one hospital (center) done for newly diagnosed multiple myeloma on a targeted high risk factor. Maybe not impossible for a large center in a multi-year trial, but very very difficult. This is generally true of all of the individual cytogenetic abnormalities. They do get studied, but sort of as a sidebar to larger studies. You do see studies for high risk, and I think those are useful and helpful, but they have to lump in all of the high risk factors together to get the numbers in the study. So in one of the greatest needs to advance the state of the art, the incidence of specific high risk patients are not enough to get a good phase 1 or 2 clinical trial done (in most cases). That is why, among other reasons, that I think the "rare' tag is a fair one. Regards,
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JPC - Name: JPC
Re: How "rare" is multiple myeloma really?
Since my husband was diagnosed, 6 months ago, I have found out about 4 people who have it. And my mom said a 'number' of people in her '55 and older' mobile home park have it.
That is a lot of people for a somewhat 'rare?' cancer ...
That is a lot of people for a somewhat 'rare?' cancer ...
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brandyjoco - Name: brandyjoco
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: September 2015
- Age at diagnosis: 54
Re: How "rare" is multiple myeloma really?
One of the facts that seem to point to a higher than 90,000 total of patients living with multiple myeloma is based on economics. Drug manufactures are spending millions to come up with new multiple myeloma drugs. As we all saw, 3 new ones were approved just last year, and there are several more in the pipeline that hold promise. If the disease was as rare as the published number, I really doubt that drug manufacturers would be willing to take the economic risk of developing a new drug to treat the disease. The upside economic benefit from such a small patient pool would not justify the investment in research costs and getting a drug approved by the FDA.
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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: How "rare" is multiple myeloma really?
The fact that myeloma consists of one percent of all cancers in the U.S., to me, says unequivocally that it is a rare cancer.
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Tom in MI - Name: Tom in MI
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 2007
- Age at diagnosis: 58
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