The disturbing reality of mant tests is that the demographic of the test sample is usually very wide.
It is likely that someone treated at a world leading facility by a true expert in the field will experience much better results. I suspect such facilities are in high demand and can limit access for honest reasons of supply to the better candidates. The SEER pool is much less selective or stacked.
I was blessed with garden variety highly treatable multiple myeloma and was dx in stage 1 prior to any of the nastier effects happenng. I also have universal healthcare and good general health. I live a couple miles from a leading multiple myeloma transplant and clinical center and a highly qualified multiple myeloma specialist. To lump my results and potential into a pool that includes those with highly resistent strains at stage 2 without universal healthcare three states away from a cancer center is not a sound test or meaningful assistance to either party. My Doctor has given me a prognosis based on my particulars that matches his experience but not the stats. I am very grateful for my circumstances.
I often wonder what the effect of access to insurance plays in stats published by places like SEER?
A valuable analysis would be to compare stats between regions of universal healthcare and regions without. I'll ask my Doctor on my next visit if he is aware of recorded differences.
When first dx I went to the internet for knowledge. I now consider my cancer situation as having no coorelation to the published stats. The studies can define trends but not offer detailed information for my decisions or other individuals. That comes from education like this thread and site and a good Doctor. Then the healthcare system to impliment the best options is critical to success. For the newly dx be cautious of the internet, particularly any info around longevity. Everything I found was wrong and broke my heart. Each step in treatment will be a new point on the discovery. Multiple Myeloma treatment is roaring ahead of the bean counters by many years. Stats are about Wall Street not your street.
Forums
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Canuck Bob - Name: Bob
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb. 2011
- Age at diagnosis: 57
Re: Berenson 5 Year OS Data Superior to UAMS
Can someone give a brief description of the two apparently different multiple myeloma treatment strategies being used by Dr. Berenson and Dr. Barlogie?
Re: Berenson 5 Year OS Data Superior to UAMS
UAMS and Dr Berenson are pretty much at opposite ends of the spectrum regarding their approach to multiple myeloma treatment.
UAMS is about aggressive, transplant-centric treatments. Dr. Berenson is about only using novel agents for treatment and would never consider a transplant.
UAMS is about aggressive, transplant-centric treatments. Dr. Berenson is about only using novel agents for treatment and would never consider a transplant.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Berenson 5 Year OS Data Superior to UAMS
"Dr. Berenson is about only using novel agents for treatment and would never consider a transplant."
Not true. Dr. Berenson makes extensive use of alkylators. He uses them in tablet form when possible (melphalan and Cytoxan). He also makes use of steroids which are not novel agents either. For example, one of his patients maintains a blog. His maintenance is bendamustine (alkylator) and steroids. Which one of those is a novel agent?
This what Dr. Berenson wrote on PubMed:
"Most patients with multiple myeloma in both the frontline and relapsed/refractory settings are now treated with a combination of dexamethasone with the proteasome inhibitor bortezomib and/or an immunomodulatory agent thalidomide or lenalidomide. However, alkylating agents including melphalan, cyclophosphamide and most recently bendamustine as well as anthracyclines, especially the pegylated liposomal doxorubicin, have shown high response rates and prolonged remissions when combined with these agents."
http://www.ncbi.nlm.nih.gov/pubmed/22871979
Does not sound like someone that only uses novel agents to me. I put a lot more weight on what he writes in published papers as opposed to what he says in interviews with patients. It seems like Berenson and Barlogie basically use the same drugs to me.
Not true. Dr. Berenson makes extensive use of alkylators. He uses them in tablet form when possible (melphalan and Cytoxan). He also makes use of steroids which are not novel agents either. For example, one of his patients maintains a blog. His maintenance is bendamustine (alkylator) and steroids. Which one of those is a novel agent?
This what Dr. Berenson wrote on PubMed:
"Most patients with multiple myeloma in both the frontline and relapsed/refractory settings are now treated with a combination of dexamethasone with the proteasome inhibitor bortezomib and/or an immunomodulatory agent thalidomide or lenalidomide. However, alkylating agents including melphalan, cyclophosphamide and most recently bendamustine as well as anthracyclines, especially the pegylated liposomal doxorubicin, have shown high response rates and prolonged remissions when combined with these agents."
http://www.ncbi.nlm.nih.gov/pubmed/22871979
Does not sound like someone that only uses novel agents to me. I put a lot more weight on what he writes in published papers as opposed to what he says in interviews with patients. It seems like Berenson and Barlogie basically use the same drugs to me.
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Mark
Re: Berenson 5 Year OS Data Superior to UAMS
Mark, yes you are correct. I meant to say that he would only consider using "drugs" and would never consider a transplant. He in fact mentioned Doxorubicin as one of the drugs he might likely use in combo with novel agents if I should progress. I've just gotten in the lazy, erroneous habit of using the term "novel drugs" to mean drugs used in the treatment of multiple myeloma.
My point here is that UAMS has a transplant-centric approach, while Berenson would never consider a transplant. They really are at opposite ends of the treatment spectrum and cjoem62 wanted a brief comparison of the two approaches.
My point here is that UAMS has a transplant-centric approach, while Berenson would never consider a transplant. They really are at opposite ends of the treatment spectrum and cjoem62 wanted a brief comparison of the two approaches.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Berenson 5 Year OS Data Superior to UAMS
Thanks Multibilly and Mark, good answers and much appreciated. C
Re: Berenson 5 Year OS Data Superior to UAMS
I don't think that Berenson would "never" consider a transplant. He individually targets his approach based upon the patient he is treating. In an appropriate setting he is not totally against transplants but they would would be low on his list. Certainly trahsplants are not his preferential approach and would be of very limited use.
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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
Ron Harvot wrote:
> I don't think that Berenson would "never" consider a transplant.
> He individually targets his approach based upon the patient he is treating.
> In an appropriate setting he is not totally against transplants but they
> would would be low on his list. Certainly trahsplants are not his
> preferential approach and would be of very limited use.
Hey Ron,
Good to hear from you.
Actually, I asked Berenson this specific question when I had my first visit with him last month and he was clear that he would "never recommend a transplant". He does have some longer term patients that had undergone transplants in the past when he used to recommend transplants, but it has been some time since he has recommended them. He basically summed it up saying that transplants used to be the only game in town, but things have changed radically with the advent of new drugs in the past few years and it is now an entirely different ballgame than when he first started treating patients.
Anyway, the point here is that these two approaches are pretty much at opposite ends of the spectrum. I'm not trying to argue whether each of the approaches hit the stops on that spectrum
Everyone needs to research and choose their own path that makes sense for them.
> I don't think that Berenson would "never" consider a transplant.
> He individually targets his approach based upon the patient he is treating.
> In an appropriate setting he is not totally against transplants but they
> would would be low on his list. Certainly trahsplants are not his
> preferential approach and would be of very limited use.
Hey Ron,
Good to hear from you.
Actually, I asked Berenson this specific question when I had my first visit with him last month and he was clear that he would "never recommend a transplant". He does have some longer term patients that had undergone transplants in the past when he used to recommend transplants, but it has been some time since he has recommended them. He basically summed it up saying that transplants used to be the only game in town, but things have changed radically with the advent of new drugs in the past few years and it is now an entirely different ballgame than when he first started treating patients.
Anyway, the point here is that these two approaches are pretty much at opposite ends of the spectrum. I'm not trying to argue whether each of the approaches hit the stops on that spectrum
Everyone needs to research and choose their own path that makes sense for them.-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Berenson 5 Year OS Data Superior to UAMS
I stand corrected. Thanks for the info!
Ron
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: Berenson 5 Year OS Data Superior to UAMS
In my opinion, the SCT and it's odds of getting to long term remission are not good enough.
I'm in Stringent Complete Remission after 3 cycles of Velcade Sub Q once a week. 15 mg of Revlimid for 21 days and, 50 mg of Prednisone 3days/wk. every other day.
I was asymptomatic when I started treatment. My doctor, Dr. Jagannath, saw my numbers creeping up and said let's start before the myeloma could do any damage. I've never had any CRAB symptoms and, still don't.
I'll be harvesting my stem cells in 3 months. Don't plan on using them for a long time, if at all.
Seems like the SCT is being used less and, only when it's absolutely necessary,
I'm in Stringent Complete Remission after 3 cycles of Velcade Sub Q once a week. 15 mg of Revlimid for 21 days and, 50 mg of Prednisone 3days/wk. every other day.
I was asymptomatic when I started treatment. My doctor, Dr. Jagannath, saw my numbers creeping up and said let's start before the myeloma could do any damage. I've never had any CRAB symptoms and, still don't.
I'll be harvesting my stem cells in 3 months. Don't plan on using them for a long time, if at all.
Seems like the SCT is being used less and, only when it's absolutely necessary,
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Stan W. - Name: Stan
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: SMM-April 2012
- Age at diagnosis: 58
43 posts
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