I just saw this on the web. This is from SEER database data.
Institute for Myeloma & Bone Cancer Research(Dr. Berenson), West Hollywood, CA - In a study of 100 of his patients his 5 year survival rate is 80% vs. the SEER data of 40.9%.
UAMS in Little Rock AR - They have posted their 5years survival rate is 65% versus the SEER data of 40.9%. The survival rate for newly diagnosed patients is 74% vs. the SEER data of 40.9%.
This really shows that you need to go to a top notch facility. Despite different approaches, both are well above the average. Awesome job Dr. Berenson and Dr. Barlogie!
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Re: Berenson 5 Year OS Data Superior to UAMS
Hi, Mark:
Thanks. These are very valuable data for patients who are trying to make treatment decisions. I had been wondering why we didn't have the data readily available.
Ben
Thanks. These are very valuable data for patients who are trying to make treatment decisions. I had been wondering why we didn't have the data readily available.
Ben
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Ben S.
Re: Berenson 5 Year OS Data Superior to UAMS
Hi Mark,
Good Info.
But perhaps I am misinterpreting it, as it seems to show UAMS as having superior OS data, i.e. 9 is >8:
"The SEER data from the National Cancer Institute indicates that there is an average of 65% for 2 year survival, where as some of the Clinical Trials from Mayo Clinic show 87% 2 year survival. Also a doctor in LA, Dr. Berenson has shown 5 year survival of 80%, and this is much better than the SEER data of 41%. Therefore, you are nearly 3 times more likely to survive in his care than in the average SEER facility. UAMS is an excellent center and publishes their average life expectancy of almost 9 years versus the recent SEER life expectancy of 4 years. "
Personally, I really think Berenson numbers are great and I agree with his philosophy, particular when it comes to SCT. And based on his survival data, his approach is effective and compelling.
Good Info.
But perhaps I am misinterpreting it, as it seems to show UAMS as having superior OS data, i.e. 9 is >8:
"The SEER data from the National Cancer Institute indicates that there is an average of 65% for 2 year survival, where as some of the Clinical Trials from Mayo Clinic show 87% 2 year survival. Also a doctor in LA, Dr. Berenson has shown 5 year survival of 80%, and this is much better than the SEER data of 41%. Therefore, you are nearly 3 times more likely to survive in his care than in the average SEER facility. UAMS is an excellent center and publishes their average life expectancy of almost 9 years versus the recent SEER life expectancy of 4 years. "
Personally, I really think Berenson numbers are great and I agree with his philosophy, particular when it comes to SCT. And based on his survival data, his approach is effective and compelling.
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Berenson 5 Year OS Data Superior to UAMS
I think the way the data being discussed here have been introduced is very misleading.
The data comparing a single center's survival data to the SEER overall averages do not come from SEER itself.
As far as I know, SEER does not publish any data that make it possible to calculate survival statistics for individual treatment centers.
So the information about survival rates at an individual treatment center is going to come from -- you guessed it! -- the treatment center itself.
Those data are almost certainly going to be unaudited and unavailable for outside scrutiny by any kind of scientific peer group.
Those data also will reflect whatever policies the center has about excluding from the sample patients that the center doesn't feel "belong" in the sample.
Not to mention the fact that the center -- particularly smaller ones like the Berenson center -- may purposely decline to treat certain patients who might push down any survival numbers they publish.
So, if you would believe a big business that advertises its products based on internal, unaudited studies showing how great their products are, then, yes, you can feel comfortable believing the survival numbers put out by these treatment centers.
In my case, I'm choosing to stay skeptical about these sorts of numbers until I can feel comfortable that you can really make apples to apples comparisons with them.
The data comparing a single center's survival data to the SEER overall averages do not come from SEER itself.
As far as I know, SEER does not publish any data that make it possible to calculate survival statistics for individual treatment centers.
So the information about survival rates at an individual treatment center is going to come from -- you guessed it! -- the treatment center itself.
Those data are almost certainly going to be unaudited and unavailable for outside scrutiny by any kind of scientific peer group.
Those data also will reflect whatever policies the center has about excluding from the sample patients that the center doesn't feel "belong" in the sample.
Not to mention the fact that the center -- particularly smaller ones like the Berenson center -- may purposely decline to treat certain patients who might push down any survival numbers they publish.
So, if you would believe a big business that advertises its products based on internal, unaudited studies showing how great their products are, then, yes, you can feel comfortable believing the survival numbers put out by these treatment centers.
In my case, I'm choosing to stay skeptical about these sorts of numbers until I can feel comfortable that you can really make apples to apples comparisons with them.
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TerryH
Re: Berenson 5 Year OS Data Superior to UAMS
ICAM, TerryH!!
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Berenson 5 Year OS Data Superior to UAMS
Ok help me out please what is SEER facility, I am reading and trying to absorb. I go to Cancer Treatment Centers of America.
I have not asked what my survival rate is after stem cell. After reading the fourm i am truely a novas in what i know about this.
I have not asked what my survival rate is after stem cell. After reading the fourm i am truely a novas in what i know about this.
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greg matthews - Name: Greg Matthews
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 12-28-2010
- Age at diagnosis: 48
Re: Berenson 5 Year OS Data Superior to UAMS
I'm not sure what "ICAM" is, Susierose, but Amen to TerryH's comments!
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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: Berenson 5 Year OS Data Superior to UAMS
ICAM= I couldn't agree more
SEER= Surveillance Epidemeiology and End Results
SEER= Surveillance Epidemeiology and End Results
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Berenson 5 Year OS Data Superior to UAMS
There is an underlying question raised here, are the results of Dr. Berenson's methods as good or better than UAMS ie: using long term combination novel agents vs. double ASCT? The novel agents have not been around long enough used in combination, such as RVD coupled with bisphosphonates to know what long term survival will be. Used in combination, however, it would appear that it is more likely than not, the myeloma will have a more difficult time building resistance. Therefore, it is hoped that the combination therapy will hold off relapse for a long time, perhaps indefinitely. It is thought, that Myeloma patients that initially respond to RVD at a CR level, should be able to hold that level over long periods of time. After initial induction therapy, the drugs levels can be reduced in both amount and/or frequency, however like an HIV patient receiving combination therapy the drugs are never stopped. The question of what levels the drugs should be reduced to must be individually determined by the patient’s response.
Not enough data exists at this point, to say what the 10 year survival rates will be with the combination approach. However, I find it interesting that even after ASCT, most specialists are now recommending long term maintenance therapy that includes combinations such as RD and bisphosphonates.
Not enough data exists at this point, to say what the 10 year survival rates will be with the combination approach. However, I find it interesting that even after ASCT, most specialists are now recommending long term maintenance therapy that includes combinations such as RD and bisphosphonates.
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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: Berenson 5 Year OS Data Superior to UAMS
I think the bald truth is that you can attempt to eradicate a stem cell recipient's bone marrow as many times as you want, a la Barlogie, but until you can eliminate the pre-myeloma cells (in both the donor cells and the recipient), it seems to me that you will always have to comtemplate maintenance.
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Dan D
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