nvandyk wrote:
> >
> When I began treatment, Velcade wasn't used in newly diagnosed patients --
> except by Bart. Now it is standard. Revlimid wasn't used in newly
> diagnosed patients -- except by Bart. Now it is standard. Maintenance
> wasn't used, except by Bart. Now it is standard.
To nvandyk: I won't debate whether or not Arkansas' treatment is superior to any other. However, it bothers me that you continue to state that Barlogie was the first to do this or the first to treat with that, etc.
I have followed your blog for some time and will tell you that I started treatment roughly the same time you did. My treatment took place in Philadelphia. The first drug I received as a newly diagnosed patient was, in fact, Velcade. With the Velcade, again, as a newly diagnosed patient, I received Revlimid. I think for you to say that Bart was the only one giving Velcade/Revlimid to newly diagnosed patients is preposterous.
It seems to me that Bart has a convenient answer to any questions asked of him by his patients. IOW he tells them what they want to hear at that particular moment in time and sometimes his answers to the same questions change depending on the patient. This is not meant to anger you or upset you. Just my humble opinion.
Forums
Re: Report on Myeloma Trials at UAMS
Good debate. Aren't Dr. Berenson's long term survival numbers very high vis-a-vis MIRT and he is pretty much opposed to transplantation? I pray we all get our multiple myeloma equivalent of Gleevec as another poster mentioned.
-
terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: Report on Myeloma Trials at UAMS
"We believe treating multiple myeloma aggressively on the front end is the key to long periods of remission, a longer life, and a better quality of life for multiple myeloma patients.
If you hit the myeloma cells hard at the beginning when they have not been exposed to treatment before, you will catch them off guard. Whereas, if you take the approach of starting off with less aggressive treatment and only moving to more aggressive treatment if a patient relapses, the myeloma cells have grown smarter in the meantime . The myeloma cells sense the effort to get rid of them, and they have time to grow resistant to treatment. Treatment will therefore ultimately be less effective."
The only thing with this approach is that studies show there is not better survival for patients whether they undergo high-dose chemotherapy immediately following induction or whether they wait until they relapse following induction.
Survival is the same.
If you hit the myeloma cells hard at the beginning when they have not been exposed to treatment before, you will catch them off guard. Whereas, if you take the approach of starting off with less aggressive treatment and only moving to more aggressive treatment if a patient relapses, the myeloma cells have grown smarter in the meantime . The myeloma cells sense the effort to get rid of them, and they have time to grow resistant to treatment. Treatment will therefore ultimately be less effective."
The only thing with this approach is that studies show there is not better survival for patients whether they undergo high-dose chemotherapy immediately following induction or whether they wait until they relapse following induction.
Survival is the same.
-
suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Report on Myeloma Trials at UAMS
Hi Mark,
That is some very disturbing news about the IRB at MIRT. However it is consistent with how Barlogie has operated within the medial community with regards to TT. He has monopolized data and created a whole marketing protocol to persuade patients to enter his protocols. It is almost like being immersed into a cult from what folks have said about the TT 'family'. I understand folks have to committ to staying in housing right there, effectively moving away from home, and being surrounded by Barlogie acolytes. It sorta reminds me of a cult. After all that is one of the first things cult do, is move the folks away from home to indoctrinate them Honestly, it is scary.
Other than re-hab I can't think of other medical cancer programs that have that kind of initiation..
That is some very disturbing news about the IRB at MIRT. However it is consistent with how Barlogie has operated within the medial community with regards to TT. He has monopolized data and created a whole marketing protocol to persuade patients to enter his protocols. It is almost like being immersed into a cult from what folks have said about the TT 'family'. I understand folks have to committ to staying in housing right there, effectively moving away from home, and being surrounded by Barlogie acolytes. It sorta reminds me of a cult. After all that is one of the first things cult do, is move the folks away from home to indoctrinate them Honestly, it is scary.
Other than re-hab I can't think of other medical cancer programs that have that kind of initiation..
-
suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Report on Myeloma Trials at UAMS
This is a great debate. Can somebody provide more information on this? Like dates etc? I was under the assumption that Bart has been a real pioneer and most of his "newer" therapies he used are being used as standard therapies years later. I've always pushed my oncologist to be aggressive like UAM and have been happy with results.
"vandyk wrote:
> >
> When I began treatment, Velcade wasn't used in newly diagnosed patients --
> except by Bart. Now it is standard. Revlimid wasn't used in newly
> diagnosed patients -- except by Bart. Now it is standard. Maintenance
> wasn't used, except by Bart. Now it is standard.
To nvandyk: I won't debate whether or not Arkansas' treatment is superior to any other. However, it bothers me that you continue to state that Barlogie was the first to do this or the first to treat with that, etc."
"vandyk wrote:
> >
> When I began treatment, Velcade wasn't used in newly diagnosed patients --
> except by Bart. Now it is standard. Revlimid wasn't used in newly
> diagnosed patients -- except by Bart. Now it is standard. Maintenance
> wasn't used, except by Bart. Now it is standard.
To nvandyk: I won't debate whether or not Arkansas' treatment is superior to any other. However, it bothers me that you continue to state that Barlogie was the first to do this or the first to treat with that, etc."
-
stann
Re: Report on Myeloma Trials at UAMS
Hi...it seems that the trend for the future is that the 'novel' agents will be of a great deal of help in keeping myeloma at bay. That is what I get from listening to expert speakers, and from reading also. tHE 'data' is still not in yet (i.e. the new drugs have only been available for a short number of years. When you count in carfilzomib, that is even only about a year, yet the data look good!). So I can see why some patients take a 'watch and wait' attitude towards getting any kind of SCT, especially if there are complications with cytogenetics. In my own case, I have had two novel agents, with an ASCT in the middle of those times! So far, it has worked well. I feel really lucky to have been sick in the era of 'novel' agents, since it seems that the myeloma was there for a number of years previously, unknown to me. Did not realize that I must have gone through the progression of MGUS and smoldering, but by the time it all changed into an active myeloma, the new drugs were there for me. Seems the playing field is changing all the time...the 'goal posts' are being moved back, as it were. This makes it kind of confusing though for newly diagnosed patients, no doubt!
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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: Report on Myeloma Trials at UAMS
Suzierose -
In the interest of promoting a dialogue on this very important topic, I would like to respond to your post. With as much civility and with as little emotion as possible!
> Myeloma is a disease where patients have to make a lot of difficult choices
> typically based on a lot more emotion than scientifically validated data.
> Ignorance is often a reason for offense.
I agree that Myeloma is a disease where patients must make difficult choices. These choices are based on a number of diverse factors, including the patient's age, general health other than Myeloma, approach to crisis management, insurance plan and the risk profile of their disease, which is increasingly identified as an individual issue but which clearly has common elements.
Some people make decisions emotionally, depending upon their personality. There actually is a lot of data available in Myeloma, though certainly there is not a single perspective on what to do. A lot of the published data is rather old, a lot of it overlaps (usually unsatisfactorily) and only solves maybe 20% of the question (if the question is: how can I beat this disease?). The one place that has statistically-signficant data based on sample size is, of course, UAMS. One who is data driven (as I am, having an MBA and having worked as a management consultant) is likely to be drawn to UAMS for this data, among other reasons.
If it is proven that this data is brazenly falsified, then of course it has no value. I don't believe the data to be brazenly falsified and until there is ample evidence of it, I'm going to base my answer (and my approach to treatment) on this data and the story it tells…which to me, as one whose living is based in part on making forecasts from data sets via both analogies and longitudinal extrapolation, is convincing.
Regarding offense, there are many sources for it. Ignorance may be one. I can be guilty of many things, but ignorance isn't usually one. Having said that, I do concede that part of my response was emotional...it stemmed not from ignorance but from a decisive feeling of gratitude for the people that saved my life.
> The entire team at MIRT is experimenting precisely because it does not have data that is
> scientifically and clinically validated
On what do you base this? They have data which is statistically significant -- more than any other center in the world, in fact. The MMRF doesn't doubt its validity -- they, in fact, want the data. We will get to the concept of double-blind testing in a moment. If you will only accept the data if it is replicated elsewhere, then you will be waiting for a long time. If the world accepted Barlogie as gospel truth tomorrow, it would take ten years. The newly diagnosed Myeloma patient doesn’t have the luxury of waiting that long. If we did, the answer would be a lot more simple and unequivocal.
> nor hav TT outcomes been replicated at other centers.
This is correct, although I think it is a matter of time. When I was diagnosed, there was talk about it being rolled out at SWOG. When I went to City of Hope, the highly regarded head of hematology there offered to follow the protocol. I had the choice of being one of the first persons outside Arkansas to go through it, or being the 1,000th or so person to undergo it there. Common sense dictates that the latter approach is the safer one.
In addition to time, there are other reasons why TT hasn’t been replicated elsewhere. Among them, ego. Top doctors in this field want to cure this disease. If I’m a well-regarded and well-funded doctor and I can either spend time researching novel drugs in the hope that I find a Gleevec for this, or I can drop all that and copy somebody else’s protocol, what do you think I’m likely to do? I’ve met plenty that are at the forefront of Myeloma research and they ALL have egos, including of course Bart. There’s nothing wrong with that – it helps propel us towards a cure.
>That is what it means to experiment. It is not a lay person 'frankenstein' concept
> when the word experiment is used.
It can be used both ways, as you surely know. Used in the non-Frankenstinian way, I think you would have to concede that every single doctor treating myeloma anywhere in the world is experimenting – because they are following a protocol of their own design, with uncertain outcome. Until such time as every center has twenty years of data comparing tandem transplants with novel drugs versus novel drugs alone, doctors will be experimenting. Again, one can make a decision based on some data, or no data. I choose some data.
> It means the trials are not medically nor clinically validated anywhere.
> It's a crap shoot for the patient.
In the broadest definition, it is a gamble, of course, and until such time as the perfect data set exists, it always will be. But to suggest that we cannot look at the 20+ years of history from MIRT and the 9 years of TT3 data is, in my opinion, incorrect. If you have hundreds of patients having gone through a protocol with results that are routinely published and subject to scientific review (there are plenty of “big name” Myeloma doctors that have peer reviewed Barlogie’s work) you have data from which to work. Have you looked at the TT3 outcome data? If you do, and you understand statistics, it’s impossible not to be at least understand the theory, regardless of whether or not you are swayed by it. It requires that you believe multiple myeloma behaves similarly to another blood-borne cancer that responded to Total Therapy – and the first 20 years of research does bear this out based on the survival curves. Would this data be better if it covered ten thousand patients and was done in 20 centers around the world? Of course. We aren’t there yet. It doesn’t mean it isn’t more robust data than exists anyplace else. It’s a numbers game – they’ve had more patients, they have more tissue samples, they have more records of results. Barlogie sees more new Myeloma patients in week than most doctors see in a year. If this data was useless, other centers wouldn’t suggest that people get gene array work done at UAMS.
> MIRT refuses to allow other investigative arms from other clinical centers and
> scientists to compare the efficacy and fatality rates of his TT.
On what do you base this? The elements of TT are published and anybody can use them (although as you are likely aware, anything that is published is a couple of years behind given the time required for peer-review, etc.). It’s not like you can’t read and understand what TT is, if you are a Myeloma doctor. There are plenty of centers that are now pursuing a more aggressive protocol now (Tricot, Siegel, the guy in Michigan whose name escapes me) and there are more and more doctors speaking in terms of a percentage of patients being cured. Recently I was on a panel with Dr. Vij and he said that some protocols appeared to be curing people; Dr. Hari was on a subsequent panel which I was unfortunately unable to join despite being invited and he also believes some people are being cured. They may argue with the percentages but they don’t argue with the concept.
Where, and how, is Bart refusing to allow others to compare the efficacy of TT?
> Presenting a patient with data from their own trials is the very definition
> of lack of full disclosure, as there is only a single source for the
> information the patients are propagandized with and often times lack the
> expertise for a comparative assessment.
That’s one perspective. Another is that knowledge is power, and that I’d rather have a lot of data from a center that is willing to share it, rather than none. Some patients may lack the expertise for a comparative assessment. I, as a sample of one, did not. And I spoke with the best in the US, if not the world, as other opinions – and none of them believed Bart to be the ogre that your statements make him out to be. Not one of these important doctors claimed Bart’s data was falsified. Not one doubted that Bart’s treatment resulted in very long remissions, if not cure (this was four years ago, with four more years of following the cohort the argument is more persuasive). The concern was primarily that years down the road, the treatment could lead to secondary malignancies, or that the myeloablative nature of the treatment could render the patient unable to receive later treatment (e.g., from novel drugs that might be developed ten years down the road that could offer a cure). These are, of course, issues. Revlimid combined with ANY alkalizing agent appears to be a dangerous combination. Still, at the time I was diagnosed, running the risk of getting a secondary cancer in 10 years seemed to be a high class problem.
> There is no such thing as operational cure, it is nothing but a made up
> term to hype TT.
With respect, I disagree. The term “operational cure” is used with respect to Leukemia as well as Myeloma and may be used elsewhere. Given the age of most patients, it’s hard to follow people for 30 years. I’d be perfectly happy to use the term “cure” but it’s likely to be decades before there are enough young people diagnosed who have survived long enough to prove statistically the most stringent definition of that term.
> IOW's either it's a cure of it's not. The most likely
> reason no one has numbers comparable to MIRT is because they also do not
> have a lot of fatalities from unknown causes that inflate the efficacy
> outcomes. If the therapy is so fantastically superior why is no one else
> able to do it?
PLENTY of centers now pursue more aggressive therapy than they did a few years ago, in part as a result of Bart’s success. Huntsman is MORE aggressive than UAMS given they use bendamustine in addition to melphalan for high dose ACST. Michigan does tandem transplants. Now that Tricot is at Iowa, they will be aggressive. I believe it was an Italian study (could be wrong on the country, although I’m pretty sure it was European) that last year showed tandem transplants to prolong survival. My doctor at City of Hope was perfectly prepared to do Total Therapy on me, as I said.
You should consider the degree to which the medical community has moved over the last five years since TT3 protocols were published. I’ll be the first to agree with you that TT2 didn’t look so hot – it may have been great compared to the alternatives at the time but it certainly wasn’t curative for the vast majority of patients, though it did prove the worth of Thalidomide (I’m sure you won’t be jumping up and down to identify Bart as the reason that IMIDs are used, but without his work, they wouldn’t be). That said, there has been a tremendous movement towards more aggressive frontline treatment with the intent of providing longer remissions (this can be demonstrated by now), longer overall survival (this can only be forecasted using statistical methods which you may or may not find persuasive) and cure (see previous parenthetical plus additional aforementioned caveats).
> Using any oncology drug off-label is not some pioneering trailblazing
> concept, the vast majority of chemotherapy is off-label use and this has
> been true for over 40 years. Ergo.. UAMS is a maverick, alrright, but
> not in terms of using therapeutic drugs not indicated for myeloma.
My point was that treating it more aggressively – as was done in pediatric Leukemia, it’s not like he made up the concept of Total Therapy – was something Bart did that is now being followed. It’s not about using an IMID off-label. It’s about using Velcade and Revlimid in frontline therapy rather than reserving it for recurrence or even salvage therapy, which is how it was being routinely used a few years ago.
> It could be argued that the continued use of such brutal and toxic therapy
> is sheer malevolence with the sole purpose to promote stem cell salvage as
> therapy in order to deliver the most toxic doses of chemotherapy to
> uninformed myeloma patients who believe those stem cells are transformative
> therapy, while making obscene profits. Given that failure is often due to
> the lethal toxic doses MIRT has standardized.
It’s difficult not to be emotional in a response since this character assassination borders on Godwinism. I will only say that the best and brightest doctors in the Myeloma community do not share your opinion of the man, and I daresay they know a hell of a lot more than either you or I do about Bart’s motivations and accomplishments. I *do* most likely know more about the man than you do, though – I know what he makes, for example, and it’s a lot less than entry level plastic surgeons in Los Angeles and probably most hematologists here as well. He’s not doing this to get rich. In fact, were that the case, he would want to keep people on maintenance indefinitely. Just last week I spoke with one of the leading novel agent doctors in the world about my maintenance situation and he suggested I could be on oral Velcade INDEFINITELY. That sounds like a way to continue making money. Whereas Bart, sooner or later, will stop all maintenance.
I wonder what has engendered this deep personal animus that you have against not only those people, but even against patients who were successfully treated?
I’ve been to dinner with Bart and his wife when Bart lost a patient (this patient had been extensively treated by an anti-transplant doctor of renown, which treatment almost killed her – she then went to another prominent doctor who her husband told me had saved her life, and after a year he said he could do no more and referred her to Bart, who bought her another nine months or so). Bart is emotionally invested in the outcome of his patients. I’ve seen more dedication, care and love from that man than from any doctor with whom I’ve been associated. Were you to see him, you would ease up on your personal attacks even if you didn’t agree with his statistics.
> But rather than argue the point...let the facts suffice as it appears we
> now have the mortality statistics to demonstrate the cruel hoax that MIRT
> has been allowed to perpetrate.
I’m redacting my initial response in the interest of civility. : ) Are you subjecting this former employee to the same degree of scrutiny that you apply to UAMS’ peer-reviewed publications? Or are you simply accepting the worst possible interpretation of his accusations as the truth? Moreover, even if we assume that this former employee is 100% correct and that 100% of the “unknown” causes of death are TRM. That has nothing to do with the percentage still in remission years after having ceased all therapy. I’ll take those odds.
> Those who leave MIRT with their lives are damn lucky.
This is a patently false statement. I could just as easily say that people who reject Total Therapy and are still around in 10 years are damn lucky. And I’d have more statistics to back me up.
I apologize if any of my comments come across as uncivil. I do think this is an important dialogue and one deserving of serious and polite discussion, and I would be pleased to respond to continued posts with that in mind.
** Moderator's Note: This posting has been edited to reflect changes that were made in the original posting by user suzierose to which this posting is a response.
In the interest of promoting a dialogue on this very important topic, I would like to respond to your post. With as much civility and with as little emotion as possible!
> Myeloma is a disease where patients have to make a lot of difficult choices
> typically based on a lot more emotion than scientifically validated data.
> Ignorance is often a reason for offense.
I agree that Myeloma is a disease where patients must make difficult choices. These choices are based on a number of diverse factors, including the patient's age, general health other than Myeloma, approach to crisis management, insurance plan and the risk profile of their disease, which is increasingly identified as an individual issue but which clearly has common elements.
Some people make decisions emotionally, depending upon their personality. There actually is a lot of data available in Myeloma, though certainly there is not a single perspective on what to do. A lot of the published data is rather old, a lot of it overlaps (usually unsatisfactorily) and only solves maybe 20% of the question (if the question is: how can I beat this disease?). The one place that has statistically-signficant data based on sample size is, of course, UAMS. One who is data driven (as I am, having an MBA and having worked as a management consultant) is likely to be drawn to UAMS for this data, among other reasons.
If it is proven that this data is brazenly falsified, then of course it has no value. I don't believe the data to be brazenly falsified and until there is ample evidence of it, I'm going to base my answer (and my approach to treatment) on this data and the story it tells…which to me, as one whose living is based in part on making forecasts from data sets via both analogies and longitudinal extrapolation, is convincing.
Regarding offense, there are many sources for it. Ignorance may be one. I can be guilty of many things, but ignorance isn't usually one. Having said that, I do concede that part of my response was emotional...it stemmed not from ignorance but from a decisive feeling of gratitude for the people that saved my life.
> The entire team at MIRT is experimenting precisely because it does not have data that is
> scientifically and clinically validated
On what do you base this? They have data which is statistically significant -- more than any other center in the world, in fact. The MMRF doesn't doubt its validity -- they, in fact, want the data. We will get to the concept of double-blind testing in a moment. If you will only accept the data if it is replicated elsewhere, then you will be waiting for a long time. If the world accepted Barlogie as gospel truth tomorrow, it would take ten years. The newly diagnosed Myeloma patient doesn’t have the luxury of waiting that long. If we did, the answer would be a lot more simple and unequivocal.
> nor hav TT outcomes been replicated at other centers.
This is correct, although I think it is a matter of time. When I was diagnosed, there was talk about it being rolled out at SWOG. When I went to City of Hope, the highly regarded head of hematology there offered to follow the protocol. I had the choice of being one of the first persons outside Arkansas to go through it, or being the 1,000th or so person to undergo it there. Common sense dictates that the latter approach is the safer one.
In addition to time, there are other reasons why TT hasn’t been replicated elsewhere. Among them, ego. Top doctors in this field want to cure this disease. If I’m a well-regarded and well-funded doctor and I can either spend time researching novel drugs in the hope that I find a Gleevec for this, or I can drop all that and copy somebody else’s protocol, what do you think I’m likely to do? I’ve met plenty that are at the forefront of Myeloma research and they ALL have egos, including of course Bart. There’s nothing wrong with that – it helps propel us towards a cure.
>That is what it means to experiment. It is not a lay person 'frankenstein' concept
> when the word experiment is used.
It can be used both ways, as you surely know. Used in the non-Frankenstinian way, I think you would have to concede that every single doctor treating myeloma anywhere in the world is experimenting – because they are following a protocol of their own design, with uncertain outcome. Until such time as every center has twenty years of data comparing tandem transplants with novel drugs versus novel drugs alone, doctors will be experimenting. Again, one can make a decision based on some data, or no data. I choose some data.
> It means the trials are not medically nor clinically validated anywhere.
> It's a crap shoot for the patient.
In the broadest definition, it is a gamble, of course, and until such time as the perfect data set exists, it always will be. But to suggest that we cannot look at the 20+ years of history from MIRT and the 9 years of TT3 data is, in my opinion, incorrect. If you have hundreds of patients having gone through a protocol with results that are routinely published and subject to scientific review (there are plenty of “big name” Myeloma doctors that have peer reviewed Barlogie’s work) you have data from which to work. Have you looked at the TT3 outcome data? If you do, and you understand statistics, it’s impossible not to be at least understand the theory, regardless of whether or not you are swayed by it. It requires that you believe multiple myeloma behaves similarly to another blood-borne cancer that responded to Total Therapy – and the first 20 years of research does bear this out based on the survival curves. Would this data be better if it covered ten thousand patients and was done in 20 centers around the world? Of course. We aren’t there yet. It doesn’t mean it isn’t more robust data than exists anyplace else. It’s a numbers game – they’ve had more patients, they have more tissue samples, they have more records of results. Barlogie sees more new Myeloma patients in week than most doctors see in a year. If this data was useless, other centers wouldn’t suggest that people get gene array work done at UAMS.
> MIRT refuses to allow other investigative arms from other clinical centers and
> scientists to compare the efficacy and fatality rates of his TT.
On what do you base this? The elements of TT are published and anybody can use them (although as you are likely aware, anything that is published is a couple of years behind given the time required for peer-review, etc.). It’s not like you can’t read and understand what TT is, if you are a Myeloma doctor. There are plenty of centers that are now pursuing a more aggressive protocol now (Tricot, Siegel, the guy in Michigan whose name escapes me) and there are more and more doctors speaking in terms of a percentage of patients being cured. Recently I was on a panel with Dr. Vij and he said that some protocols appeared to be curing people; Dr. Hari was on a subsequent panel which I was unfortunately unable to join despite being invited and he also believes some people are being cured. They may argue with the percentages but they don’t argue with the concept.
Where, and how, is Bart refusing to allow others to compare the efficacy of TT?
> Presenting a patient with data from their own trials is the very definition
> of lack of full disclosure, as there is only a single source for the
> information the patients are propagandized with and often times lack the
> expertise for a comparative assessment.
That’s one perspective. Another is that knowledge is power, and that I’d rather have a lot of data from a center that is willing to share it, rather than none. Some patients may lack the expertise for a comparative assessment. I, as a sample of one, did not. And I spoke with the best in the US, if not the world, as other opinions – and none of them believed Bart to be the ogre that your statements make him out to be. Not one of these important doctors claimed Bart’s data was falsified. Not one doubted that Bart’s treatment resulted in very long remissions, if not cure (this was four years ago, with four more years of following the cohort the argument is more persuasive). The concern was primarily that years down the road, the treatment could lead to secondary malignancies, or that the myeloablative nature of the treatment could render the patient unable to receive later treatment (e.g., from novel drugs that might be developed ten years down the road that could offer a cure). These are, of course, issues. Revlimid combined with ANY alkalizing agent appears to be a dangerous combination. Still, at the time I was diagnosed, running the risk of getting a secondary cancer in 10 years seemed to be a high class problem.
> There is no such thing as operational cure, it is nothing but a made up
> term to hype TT.
With respect, I disagree. The term “operational cure” is used with respect to Leukemia as well as Myeloma and may be used elsewhere. Given the age of most patients, it’s hard to follow people for 30 years. I’d be perfectly happy to use the term “cure” but it’s likely to be decades before there are enough young people diagnosed who have survived long enough to prove statistically the most stringent definition of that term.
> IOW's either it's a cure of it's not. The most likely
> reason no one has numbers comparable to MIRT is because they also do not
> have a lot of fatalities from unknown causes that inflate the efficacy
> outcomes. If the therapy is so fantastically superior why is no one else
> able to do it?
PLENTY of centers now pursue more aggressive therapy than they did a few years ago, in part as a result of Bart’s success. Huntsman is MORE aggressive than UAMS given they use bendamustine in addition to melphalan for high dose ACST. Michigan does tandem transplants. Now that Tricot is at Iowa, they will be aggressive. I believe it was an Italian study (could be wrong on the country, although I’m pretty sure it was European) that last year showed tandem transplants to prolong survival. My doctor at City of Hope was perfectly prepared to do Total Therapy on me, as I said.
You should consider the degree to which the medical community has moved over the last five years since TT3 protocols were published. I’ll be the first to agree with you that TT2 didn’t look so hot – it may have been great compared to the alternatives at the time but it certainly wasn’t curative for the vast majority of patients, though it did prove the worth of Thalidomide (I’m sure you won’t be jumping up and down to identify Bart as the reason that IMIDs are used, but without his work, they wouldn’t be). That said, there has been a tremendous movement towards more aggressive frontline treatment with the intent of providing longer remissions (this can be demonstrated by now), longer overall survival (this can only be forecasted using statistical methods which you may or may not find persuasive) and cure (see previous parenthetical plus additional aforementioned caveats).
> Using any oncology drug off-label is not some pioneering trailblazing
> concept, the vast majority of chemotherapy is off-label use and this has
> been true for over 40 years. Ergo.. UAMS is a maverick, alrright, but
> not in terms of using therapeutic drugs not indicated for myeloma.
My point was that treating it more aggressively – as was done in pediatric Leukemia, it’s not like he made up the concept of Total Therapy – was something Bart did that is now being followed. It’s not about using an IMID off-label. It’s about using Velcade and Revlimid in frontline therapy rather than reserving it for recurrence or even salvage therapy, which is how it was being routinely used a few years ago.
> It could be argued that the continued use of such brutal and toxic therapy
> is sheer malevolence with the sole purpose to promote stem cell salvage as
> therapy in order to deliver the most toxic doses of chemotherapy to
> uninformed myeloma patients who believe those stem cells are transformative
> therapy, while making obscene profits. Given that failure is often due to
> the lethal toxic doses MIRT has standardized.
It’s difficult not to be emotional in a response since this character assassination borders on Godwinism. I will only say that the best and brightest doctors in the Myeloma community do not share your opinion of the man, and I daresay they know a hell of a lot more than either you or I do about Bart’s motivations and accomplishments. I *do* most likely know more about the man than you do, though – I know what he makes, for example, and it’s a lot less than entry level plastic surgeons in Los Angeles and probably most hematologists here as well. He’s not doing this to get rich. In fact, were that the case, he would want to keep people on maintenance indefinitely. Just last week I spoke with one of the leading novel agent doctors in the world about my maintenance situation and he suggested I could be on oral Velcade INDEFINITELY. That sounds like a way to continue making money. Whereas Bart, sooner or later, will stop all maintenance.
I wonder what has engendered this deep personal animus that you have against not only those people, but even against patients who were successfully treated?
I’ve been to dinner with Bart and his wife when Bart lost a patient (this patient had been extensively treated by an anti-transplant doctor of renown, which treatment almost killed her – she then went to another prominent doctor who her husband told me had saved her life, and after a year he said he could do no more and referred her to Bart, who bought her another nine months or so). Bart is emotionally invested in the outcome of his patients. I’ve seen more dedication, care and love from that man than from any doctor with whom I’ve been associated. Were you to see him, you would ease up on your personal attacks even if you didn’t agree with his statistics.
> But rather than argue the point...let the facts suffice as it appears we
> now have the mortality statistics to demonstrate the cruel hoax that MIRT
> has been allowed to perpetrate.
I’m redacting my initial response in the interest of civility. : ) Are you subjecting this former employee to the same degree of scrutiny that you apply to UAMS’ peer-reviewed publications? Or are you simply accepting the worst possible interpretation of his accusations as the truth? Moreover, even if we assume that this former employee is 100% correct and that 100% of the “unknown” causes of death are TRM. That has nothing to do with the percentage still in remission years after having ceased all therapy. I’ll take those odds.
> Those who leave MIRT with their lives are damn lucky.
This is a patently false statement. I could just as easily say that people who reject Total Therapy and are still around in 10 years are damn lucky. And I’d have more statistics to back me up.
I apologize if any of my comments come across as uncivil. I do think this is an important dialogue and one deserving of serious and polite discussion, and I would be pleased to respond to continued posts with that in mind.
** Moderator's Note: This posting has been edited to reflect changes that were made in the original posting by user suzierose to which this posting is a response.
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nvandyk
Re: Report on Myeloma Trials at UAMS
Hi Jane!
No offense taken. I appreciate your comments and I'm glad you were treated in a manner which you have found to be successful.
I based my comments on my diagnosing hematologist who told me in describing the list of drugs that Revlimid was something that "I hold until relapse, like MAYO and essentially everybody else" and that Velcade was the same thing. Bart started using Velcade in newly diagnosed patients in 2003. It's certainly possible that others were doing so, but I don't think any other major centers were.
I don't think the man is a god. He is a human being. But he is an exceptionally smart and driven human being who has spent a long time working against this disease. MAYO does not believe multiple myeloma is curable -- in other words they fundamentally disagree with some of what UAMS believes. Yet Dr. Rajkumar of MAYO said this:
"I personally feel like if you line up all the top myeloma experts and you add them up, Bart’s done more than any [sic] of them put together. He has done more for Myeloma than anybody that I know of…Because of him, transplants are done for Myeloma and transplants prolong survival. Because of him, Thalidomide came, and without Thalidomide all this fantastic stuff that’s going on in Myeloma would not have happened...The whole philosophy of cure, compete response, maintenance therapy…I could go on and on. Most of the others are just taking his ideas and just testing it in phase 3 trials or trying to do what he has done in other settings.”
I will also promise you, he doesn't simply tell people what they want to hear. I've heard -- recently, even -- stuff from him that I'd rather not hear. He is unflinchingly honest, in my experience.
Again, not a saint, just a man. But also hardly the monster that he's been made out to be here.
Regardless of this debate, the most important thing, by far, is that each patient receives the type of care which he or she most feels they can benefit from -- and that patients are not demonized or meant to feel stupid by their decisions. I hope you have a magnificent outcome from your choice of therapy!
JaneM wrote:
> nvandyk wrote:
> > >
> > When I began treatment, Velcade wasn't used in newly diagnosed patients --
> > except by Bart. Now it is standard. Revlimid wasn't used in newly
> > diagnosed patients -- except by Bart. Now it is standard. Maintenance
> > wasn't used, except by Bart. Now it is standard.
>
> To nvandyk: I won't debate whether or not Arkansas' treatment is superior to any
> other. However, it bothers me that you continue to state that Barlogie was the first
> to do this or the first to treat with that, etc.
>
> I have followed your blog for some time and will tell you that I started treatment
> roughly the same time you did. My treatment took place in Philadelphia. The first
> drug I received as a newly diagnosed patient was, in fact, Velcade. With the Velcade,
> again, as a newly diagnosed patient, I received Revlimid. I think for you to say
> that Bart was the only one giving Velcade/Revlimid to newly diagnosed patients is
> preposterous.
>
> It seems to me that Bart has a convenient answer to any questions asked of him by his
> patients. IOW he tells them what they want to hear at that particular moment in time
> and sometimes his answers to the same questions change depending on the patient.
> This is not meant to anger you or upset you. Just my humble opinion.
No offense taken. I appreciate your comments and I'm glad you were treated in a manner which you have found to be successful.
I based my comments on my diagnosing hematologist who told me in describing the list of drugs that Revlimid was something that "I hold until relapse, like MAYO and essentially everybody else" and that Velcade was the same thing. Bart started using Velcade in newly diagnosed patients in 2003. It's certainly possible that others were doing so, but I don't think any other major centers were.
I don't think the man is a god. He is a human being. But he is an exceptionally smart and driven human being who has spent a long time working against this disease. MAYO does not believe multiple myeloma is curable -- in other words they fundamentally disagree with some of what UAMS believes. Yet Dr. Rajkumar of MAYO said this:
"I personally feel like if you line up all the top myeloma experts and you add them up, Bart’s done more than any [sic] of them put together. He has done more for Myeloma than anybody that I know of…Because of him, transplants are done for Myeloma and transplants prolong survival. Because of him, Thalidomide came, and without Thalidomide all this fantastic stuff that’s going on in Myeloma would not have happened...The whole philosophy of cure, compete response, maintenance therapy…I could go on and on. Most of the others are just taking his ideas and just testing it in phase 3 trials or trying to do what he has done in other settings.”
I will also promise you, he doesn't simply tell people what they want to hear. I've heard -- recently, even -- stuff from him that I'd rather not hear. He is unflinchingly honest, in my experience.
Again, not a saint, just a man. But also hardly the monster that he's been made out to be here.
Regardless of this debate, the most important thing, by far, is that each patient receives the type of care which he or she most feels they can benefit from -- and that patients are not demonized or meant to feel stupid by their decisions. I hope you have a magnificent outcome from your choice of therapy!
JaneM wrote:
> nvandyk wrote:
> > >
> > When I began treatment, Velcade wasn't used in newly diagnosed patients --
> > except by Bart. Now it is standard. Revlimid wasn't used in newly
> > diagnosed patients -- except by Bart. Now it is standard. Maintenance
> > wasn't used, except by Bart. Now it is standard.
>
> To nvandyk: I won't debate whether or not Arkansas' treatment is superior to any
> other. However, it bothers me that you continue to state that Barlogie was the first
> to do this or the first to treat with that, etc.
>
> I have followed your blog for some time and will tell you that I started treatment
> roughly the same time you did. My treatment took place in Philadelphia. The first
> drug I received as a newly diagnosed patient was, in fact, Velcade. With the Velcade,
> again, as a newly diagnosed patient, I received Revlimid. I think for you to say
> that Bart was the only one giving Velcade/Revlimid to newly diagnosed patients is
> preposterous.
>
> It seems to me that Bart has a convenient answer to any questions asked of him by his
> patients. IOW he tells them what they want to hear at that particular moment in time
> and sometimes his answers to the same questions change depending on the patient.
> This is not meant to anger you or upset you. Just my humble opinion.
-
nvandyk
Re: Report on Myeloma Trials at UAMS
Thanks for sharing your views, Nick! This is something that I find really interesting about the Beacon...all the points of view that come in from patients and caregivers. It seems that no two people share exactly the same experiences, though. i hope that all of us somehow get through the active myeloma and emerge into a healthy state. How we do that, if it happens, is really a challenge for some of the best minds in medicine and science! it is simpler for someone like me who is not in the US, to read about what is happening, although it would not apply to my situation here. I have also had excellent care, and do feel that my doctors saved my life too! Best wishes to you....how much longer do you have on your treatments?
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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: Report on Myeloma Trials at UAMS
Nancy Shamanna wrote:
> Thanks for sharing your views, Nick! This is something that I find really
> interesting about the Beacon...all the points of view that come in from
> patients and caregivers. It seems that no two people share exactly the
> same experiences, though. i hope that all of us somehow get through the
> active myeloma and emerge into a healthy state. How we do that, if it
> happens, is really a challenge for some of the best minds in medicine and
> science! it is simpler for someone like me who is not in the US, to read
> about what is happening, although it would not apply to my situation here.
> I have also had excellent care, and do feel that my doctors saved my life
> too! Best wishes to you....how much longer do you have on your treatments?
Thanks for your post, Nancy! I agree with you 100%.
The length of my maintenance depends on the resolution of a few stubborn little pits in my spine that were once active lesions but have been Myeloma free for three years and have shrunk from 2.5cm to about 4mm. It is Bart's theory (and he readily identifies it only as a theory) that these can be microenvironments in which Myeloma can potentially restart, and he wants to keep me on Velcade until such time as they resolve fully as the other 15 or so formerly active lesions have done. This could be six months, or it could be considerably longer. As I mentioned, another doctor suggested to me that in a couple of years proteasome inhibitors could be oral and I could simply pop a pill once a week forever. I would prefer to eventually get off these drugs, though, so we'll have to see.
As not all of my former lesions have fully resolved, I am now being taken "off protocol." Bart's detractors claim he takes people off protocol willy-nilly. I, for one, am relieved to be taken off protocol to the extent my individual treatment requires different treatment than the rest of the cohort and I see nothing unethical about it whatsoever. My only regret -- other than not being able to stop all maintenance at this time -- is that I don't get to be part of the data that he uses, unless he looks at the treatment cohort differently one day.
My local onc, who studied with Bart many years ago, said one of their mentors said that the doctor must always treat the patient, not the trial, and that if a patient's needs differ from that of the trial, the patient goes off the trial. I agree completely with this approach as I'm sure most do, but it could leave some statistical damage in its wake. So be it.
I'm glad that you are pleased with your care and I wish you every success in kicking this thing to the curb!
> Thanks for sharing your views, Nick! This is something that I find really
> interesting about the Beacon...all the points of view that come in from
> patients and caregivers. It seems that no two people share exactly the
> same experiences, though. i hope that all of us somehow get through the
> active myeloma and emerge into a healthy state. How we do that, if it
> happens, is really a challenge for some of the best minds in medicine and
> science! it is simpler for someone like me who is not in the US, to read
> about what is happening, although it would not apply to my situation here.
> I have also had excellent care, and do feel that my doctors saved my life
> too! Best wishes to you....how much longer do you have on your treatments?
Thanks for your post, Nancy! I agree with you 100%.
The length of my maintenance depends on the resolution of a few stubborn little pits in my spine that were once active lesions but have been Myeloma free for three years and have shrunk from 2.5cm to about 4mm. It is Bart's theory (and he readily identifies it only as a theory) that these can be microenvironments in which Myeloma can potentially restart, and he wants to keep me on Velcade until such time as they resolve fully as the other 15 or so formerly active lesions have done. This could be six months, or it could be considerably longer. As I mentioned, another doctor suggested to me that in a couple of years proteasome inhibitors could be oral and I could simply pop a pill once a week forever. I would prefer to eventually get off these drugs, though, so we'll have to see.
As not all of my former lesions have fully resolved, I am now being taken "off protocol." Bart's detractors claim he takes people off protocol willy-nilly. I, for one, am relieved to be taken off protocol to the extent my individual treatment requires different treatment than the rest of the cohort and I see nothing unethical about it whatsoever. My only regret -- other than not being able to stop all maintenance at this time -- is that I don't get to be part of the data that he uses, unless he looks at the treatment cohort differently one day.
My local onc, who studied with Bart many years ago, said one of their mentors said that the doctor must always treat the patient, not the trial, and that if a patient's needs differ from that of the trial, the patient goes off the trial. I agree completely with this approach as I'm sure most do, but it could leave some statistical damage in its wake. So be it.
I'm glad that you are pleased with your care and I wish you every success in kicking this thing to the curb!
-
nvandyk
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