Hi Stan,
So, sorry to hear about your family members challenges.
However, false and misleading data can be easily countered with medical science, if it were available. For the record, my posts, were directed at the therapeutic goals/outcomes of selected regimens and not personal, despite them being unique to one clinical site and additionally not having been evaluated by the gold standard of comparative RCT with other regimens. A very glaring scientific issue that warrants skepticism regarding the validity of the therapy.
I think you are grievously mistaken if you believe that one individual has the power to shut down a website where experts in the medical field have all the facts, evidence and science to support their clinical judgment.
Please note, my posts were not alone in questioning the UAMS program, there were several other posters who had skepticism about UAMS, therapeutic program and methodology as well, and that is what the thread topic was initiated about.
Perhaps, you need to be asking why the silence from experts instead of pointing a finger of blame, as if it is the messenger.
IOW's don't shoot the messenger, just because you may not like the message. Afterall, the appropriate response is to rebut, with facts and scientific data that invalidates what is inaccurate. Which I assure you medical experts are more than capable of doing.
What did you find stunning in the posts? Were statements factually inaccurate, misleading or scientifically invalid? Or was the data unknown to you? Please accept my sincere apology if my words, despite being accurate, were emotionally stunning. Unfortunately, scientific data can be upsetting, if emotionally we believe something different. And often times, just because we don't believe something doesn't mean it isn't true.
What I find disturbing is that there is so much emotion rather than medical science driving the responses, focused on the personality of a clinician, instead of whether the therapeutic methodolgy is warranted or efficacious relative to the spectrum of therapeutic regimens available.
So, please accept my regrets for having infringed on any emotional beliefs medical science has yet to find evidence to support.
It is your right to belong to any cult. Enjoy it.
Forums
Re: Report on Myeloma Trials at UAMS / Arkansas
My reply was only to you. The others who posted concerns about UAM's research echo my concerns too. But their questions and accusations were based in fact and they didn't engage in slander of individuals and/or patients. My questions were honest questions. I wasn't trying to defend one side over the other.
If I were an multiple myeloma doctor/researcher volunteering my time on this website, I would be a little turned off by some of your posts and I'd take that into account when deciding if I should spend my free time answering questions. And professionally, they know many of the people or companies that you attack and it might make them uncomfortable to associate with a forum that contains your posts.
What did I find stunning? Calling patients of UAM cultists for one. Insinuating that BB recommends tandem SCT's only to make more money etc. (and I didn't' see your post before the Beacon edited it, so I can only imagine what else you wrote)
I don't have inside knowledge of what I'm talking about. I speak as a layperson. But I did witness another forum crumble due to slanderous posts.
I'll repeat..science fraud.org is a strange website. Is it legit? (an honest question).
And everybody should be aware that the person submitting the paper is an ex-employee. His concerns do seem very legitimate to me, but we do need to hear the other side.
As you can see I'm not shooting messengers, I'm just questioning them as all scientists should do.
If I were an multiple myeloma doctor/researcher volunteering my time on this website, I would be a little turned off by some of your posts and I'd take that into account when deciding if I should spend my free time answering questions. And professionally, they know many of the people or companies that you attack and it might make them uncomfortable to associate with a forum that contains your posts.
What did I find stunning? Calling patients of UAM cultists for one. Insinuating that BB recommends tandem SCT's only to make more money etc. (and I didn't' see your post before the Beacon edited it, so I can only imagine what else you wrote)
I don't have inside knowledge of what I'm talking about. I speak as a layperson. But I did witness another forum crumble due to slanderous posts.
I'll repeat..science fraud.org is a strange website. Is it legit? (an honest question).
And everybody should be aware that the person submitting the paper is an ex-employee. His concerns do seem very legitimate to me, but we do need to hear the other side.
As you can see I'm not shooting messengers, I'm just questioning them as all scientists should do.
-
Stann
Re: Report on Myeloma Trials at UAMS / Arkansas
Hi Stann,
Thanks for your response. Your reply was not a private message it was posted here in the open forum. I suspect that you could be laboring under a false assumption as if I had used profane language when in essence the post was edited so as to omit the word maverick, and insert MIRT or UAMS vs. the name of the director. I did not slander nor defame anyone at anytime.
Perhaps, I should be more concerned about the pharmaceutical industry and social networking amongst the medical community vs. whether there are other more effective therapeutic choices that provide better QOL options to patients. I will certainly weigh that bias more heavily in future posts. And note that several other posters as well bring up revenue streams and conflict of interest as concerns in numerous threads. And have done so on this thread.
"What did I find stunning?"
I did not call anyone a cultist. What I stated was that the responses from patients and inculcation remind me of a cult and that moving away from home & family, being a requirement for therapy, to reside amongst those of one therapeutic mind is unlike any other cancer center for multiple myeloma and reminds me of a cult in that regard. Does that make an individual a cultist, or does it clearly state that the experience as described has similiar aspects to a cult and is unlike any other myeloma program? BTW, in my experience only the patients from MIRT have this intense reaction and rush to defend the UAMS experience so vociferously. multiple myeloma patients treated elsewhere explain their care as opposed to mounting an emotional defense.
Are we to believe that revenue streams play no role in health care delivery and therapeutic choices? Yes, I did speculate that revenue stream could be an incentive for the rigor of the TT regimen and that is a valid speculation and should not be stunning at all. Cost-effectiveness is a huge issue in health care. The cost of MIRT was juxtapose to the OS and mortality rates, as well.
I suppose a good question would be why is MIRT/UAMS such a lightening rod? Why does discussion of that program consistently spark controversy? A few posters also noted that they had seen threads elsewhere become quite heated in past years when the program is discussed.
Which says to me, that it is not what was posted on this particular thread by myself or others, but rather the commonality is the controversy the TT program generates in the medical community amongst patients and clinicians.
Frankly, I see myself as a victim of the ferociousness I have encountered whenever TT and MIRT is discussed and can honestly say, that my posts where initially stronger in anticipation of some of the fierce emotional blowback that typically ensues with discussion of MIRT.
However, I do not believe that medical experts are put off by valid discussions of therapeutic regimens, even if they choose to remain silent when one specific program, amongst many available is discussed. Particularly, if that one program is consistently controversial. If I were a clinician I would not comment either knowing how controversial MIRT has been for well over a decade.
My opinions did not engender that controversy it was there, long before I became a multiple myeloma patient.
Thanks for your response. Your reply was not a private message it was posted here in the open forum. I suspect that you could be laboring under a false assumption as if I had used profane language when in essence the post was edited so as to omit the word maverick, and insert MIRT or UAMS vs. the name of the director. I did not slander nor defame anyone at anytime.
Perhaps, I should be more concerned about the pharmaceutical industry and social networking amongst the medical community vs. whether there are other more effective therapeutic choices that provide better QOL options to patients. I will certainly weigh that bias more heavily in future posts. And note that several other posters as well bring up revenue streams and conflict of interest as concerns in numerous threads. And have done so on this thread.
"What did I find stunning?"
I did not call anyone a cultist. What I stated was that the responses from patients and inculcation remind me of a cult and that moving away from home & family, being a requirement for therapy, to reside amongst those of one therapeutic mind is unlike any other cancer center for multiple myeloma and reminds me of a cult in that regard. Does that make an individual a cultist, or does it clearly state that the experience as described has similiar aspects to a cult and is unlike any other myeloma program? BTW, in my experience only the patients from MIRT have this intense reaction and rush to defend the UAMS experience so vociferously. multiple myeloma patients treated elsewhere explain their care as opposed to mounting an emotional defense.
Are we to believe that revenue streams play no role in health care delivery and therapeutic choices? Yes, I did speculate that revenue stream could be an incentive for the rigor of the TT regimen and that is a valid speculation and should not be stunning at all. Cost-effectiveness is a huge issue in health care. The cost of MIRT was juxtapose to the OS and mortality rates, as well.
I suppose a good question would be why is MIRT/UAMS such a lightening rod? Why does discussion of that program consistently spark controversy? A few posters also noted that they had seen threads elsewhere become quite heated in past years when the program is discussed.
Which says to me, that it is not what was posted on this particular thread by myself or others, but rather the commonality is the controversy the TT program generates in the medical community amongst patients and clinicians.
Frankly, I see myself as a victim of the ferociousness I have encountered whenever TT and MIRT is discussed and can honestly say, that my posts where initially stronger in anticipation of some of the fierce emotional blowback that typically ensues with discussion of MIRT.
However, I do not believe that medical experts are put off by valid discussions of therapeutic regimens, even if they choose to remain silent when one specific program, amongst many available is discussed. Particularly, if that one program is consistently controversial. If I were a clinician I would not comment either knowing how controversial MIRT has been for well over a decade.
My opinions did not engender that controversy it was there, long before I became a multiple myeloma patient.
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Report on Myeloma Trials at UAMS / Arkansas
suzierose,
You comment:
"I did not call anyone a cultist. What I stated was that the responses from patients and inculcation remind me of a cult and that moving away from home & family, being a requirement for therapy, to reside amongst those of one therapeutic mind is unlike any other cancer center for multiple myeloma and reminds me of a cult in that regard."
I have trouble accepting that going somewhere for treatment equates to joining a cult. If one goes anywhere that specializes in treatment for their illness (Mayo, Cleveland Clinic, etc.) it may be necessary to stay for an extended period. I don't believe it's a requirement to reside among others to have treatment at UAMS as I'm sure there are those who live within commuting distance who go back and forth as needed. Is there a Mayo Clinic cult?
I guess I don't understand your intensity on this particular topic. I've always found your input as educational and insightful but this subject seems to have hit a nerve with you. All we can do is look at the statistics, talk to the participants, and make a judgement on what we want to do.
Jesse
You comment:
"I did not call anyone a cultist. What I stated was that the responses from patients and inculcation remind me of a cult and that moving away from home & family, being a requirement for therapy, to reside amongst those of one therapeutic mind is unlike any other cancer center for multiple myeloma and reminds me of a cult in that regard."
I have trouble accepting that going somewhere for treatment equates to joining a cult. If one goes anywhere that specializes in treatment for their illness (Mayo, Cleveland Clinic, etc.) it may be necessary to stay for an extended period. I don't believe it's a requirement to reside among others to have treatment at UAMS as I'm sure there are those who live within commuting distance who go back and forth as needed. Is there a Mayo Clinic cult?
I guess I don't understand your intensity on this particular topic. I've always found your input as educational and insightful but this subject seems to have hit a nerve with you. All we can do is look at the statistics, talk to the participants, and make a judgement on what we want to do.
Jesse
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Jesse White
Re: Report on Myeloma Trials at UAMS / Arkansas
From Earlier Posting: “It is almost like being immersed into a cult from what folks have said about the TT 'family'. I understand folks have to commit 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. “
My Response: I told myself that I wasn't going to read this topic again because it saddens me but it does so much disservice to people who are already under so much stress looking for the best treatment options to meet their individual situations that I can't help commenting on the cult aspect since it keeps coming up. It is my perception that those who look on MIRT as a cult have no experience there but have an “understanding” of some deep, dark, closed, brainwashed society rather than understanding that patients who chose to be treated at MIRT do so because, after much soul searching, they feel that is the best option for their particular set of circumstances and are comfortable with the more aggressive approaches.
Patients go there for treatment cycles just as they would at any cancer treatment center at a distance from their home. They receive a cycle of treatment, then return home if they wish. There are built in down times between cycles. Any treatment center, if it is not in or near one's hometown, requires some sort of travel/housing – not only for the patient, for the caregivers too. The further from home, the more important the housing issue becomes. If one lived close enough to Little Rock, they would be able to commute.
The first thing anyone visiting centers such as Mayo, John Hopkins, Andersen, etc do is to go away from home for testing. If such facilities were too far from home to commute, they would arrange housing for varying periods of time. Little Rock is no different. And, a patient is going to be surrounded by the other patients of any facility at which they chose to receive treatments. Such patients probably also tend to experience “family” relationships with their fellow patients - that is not unique to any one facility. By the definition above, any cancer facility where the patient was away from home and surrounded by cancer patients undergoing similar treatment protocols could be considered as a cult.
It is true that housing at Little Rock is important because everything is done on an out-patient basis and there are just so many hours a day one can sit in Starbucks and drink coffee. It is also true that since patients at MIRT are from all over the world it is sometimes more convenient to remain in Little Rock between cycles. But that is a personal choice rather than a requirement. Our home, for example, was 1,000 miles from Little Rock so we choose to remain in Little Rock between a couple of cycles but went home before, between and after transplants. In fact we were encouraged to get away for a time of recovery.
In a similar fashion, I have friends with other forms of cancer who chose treatment options at a teaching hospital about 75-miles from our city. They and their caregivers spent multiple cycles away from home – on site. They also spoke highly of the relationships with their doctors, nurses, and other patients. That doesn't make it a cult environment.
Enough.
My Response: I told myself that I wasn't going to read this topic again because it saddens me but it does so much disservice to people who are already under so much stress looking for the best treatment options to meet their individual situations that I can't help commenting on the cult aspect since it keeps coming up. It is my perception that those who look on MIRT as a cult have no experience there but have an “understanding” of some deep, dark, closed, brainwashed society rather than understanding that patients who chose to be treated at MIRT do so because, after much soul searching, they feel that is the best option for their particular set of circumstances and are comfortable with the more aggressive approaches.
Patients go there for treatment cycles just as they would at any cancer treatment center at a distance from their home. They receive a cycle of treatment, then return home if they wish. There are built in down times between cycles. Any treatment center, if it is not in or near one's hometown, requires some sort of travel/housing – not only for the patient, for the caregivers too. The further from home, the more important the housing issue becomes. If one lived close enough to Little Rock, they would be able to commute.
The first thing anyone visiting centers such as Mayo, John Hopkins, Andersen, etc do is to go away from home for testing. If such facilities were too far from home to commute, they would arrange housing for varying periods of time. Little Rock is no different. And, a patient is going to be surrounded by the other patients of any facility at which they chose to receive treatments. Such patients probably also tend to experience “family” relationships with their fellow patients - that is not unique to any one facility. By the definition above, any cancer facility where the patient was away from home and surrounded by cancer patients undergoing similar treatment protocols could be considered as a cult.
It is true that housing at Little Rock is important because everything is done on an out-patient basis and there are just so many hours a day one can sit in Starbucks and drink coffee. It is also true that since patients at MIRT are from all over the world it is sometimes more convenient to remain in Little Rock between cycles. But that is a personal choice rather than a requirement. Our home, for example, was 1,000 miles from Little Rock so we choose to remain in Little Rock between a couple of cycles but went home before, between and after transplants. In fact we were encouraged to get away for a time of recovery.
In a similar fashion, I have friends with other forms of cancer who chose treatment options at a teaching hospital about 75-miles from our city. They and their caregivers spent multiple cycles away from home – on site. They also spoke highly of the relationships with their doctors, nurses, and other patients. That doesn't make it a cult environment.
Enough.
Re: Report on Myeloma Trials at UAMS / Arkansas
Chuck and Jesse,
Mayo, Hopkins, Cleveland Clinic, Anderson...all treat multiple types of cancer ..not solely myeloma.
At all of those centers when you are treated you interact with patients with many types of cancers who are receiving various chemotherapy, not just one protocol. You listen and learn all of their experiences of benefits, risks and challenges. There is not one therapy being discusssed, but rather you are exposed to the multiplicity of variables that chemotherapy and the treatment of cancer entails along with the various clinicians perspectives. No one is proselytizing about a single protocol, all marching in step to one tune based on one doctors regimen ergo...
One question.
Can you name any other cancer treatment center that focuses solely on myeloma, where patients move away from home and family for therapy other than MIRT?
If not I rest my case, in terms of how many aspects of MIRT are similar to a cult.
Mayo, Hopkins, Cleveland Clinic, Anderson...all treat multiple types of cancer ..not solely myeloma.
At all of those centers when you are treated you interact with patients with many types of cancers who are receiving various chemotherapy, not just one protocol. You listen and learn all of their experiences of benefits, risks and challenges. There is not one therapy being discusssed, but rather you are exposed to the multiplicity of variables that chemotherapy and the treatment of cancer entails along with the various clinicians perspectives. No one is proselytizing about a single protocol, all marching in step to one tune based on one doctors regimen ergo...
One question.
Can you name any other cancer treatment center that focuses solely on myeloma, where patients move away from home and family for therapy other than MIRT?
If not I rest my case, in terms of how many aspects of MIRT are similar to a cult.
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Report on Myeloma Trials at UAMS / Arkansas
I don't know....
This just sounds so ridiculous...
I don't even use UAMS/MIRT and I cannot get my mind around your beliefs. I just looked at the UAMS website and it tells how they treat all kinds of cancer at their Winthrop Rockefeller Cancer Institute.
As for myeloma, isn't the MIRT just an outgrowth of all the research and specialization chosen to be done by interested doctors? Success breeds growth and brings in interested patients. And I don't believe everybody follows the same treatment plan but you are correct in that they are probably similar. I'm sure most doctors use protocols that they've found success with in the past.
I don't know about other cancer specialization clinics but how about something like the Cleveland Clinic being known for its cardiology work? People travel from everywhere to take advantage of their expertise and experience. That's how I feel about the UAMS/myeloma connection.
I don't know... cult is such a negative term for people that I believe are just trying to help others.
Everybody has to make their own choice for treatment. There is no need to belittle them after they've done that. And implying that someone is a cult member is doing that. Your writings on this topic just seem too personal to me.
I'm sorry about that.
This just sounds so ridiculous...
I don't even use UAMS/MIRT and I cannot get my mind around your beliefs. I just looked at the UAMS website and it tells how they treat all kinds of cancer at their Winthrop Rockefeller Cancer Institute.
As for myeloma, isn't the MIRT just an outgrowth of all the research and specialization chosen to be done by interested doctors? Success breeds growth and brings in interested patients. And I don't believe everybody follows the same treatment plan but you are correct in that they are probably similar. I'm sure most doctors use protocols that they've found success with in the past.
I don't know about other cancer specialization clinics but how about something like the Cleveland Clinic being known for its cardiology work? People travel from everywhere to take advantage of their expertise and experience. That's how I feel about the UAMS/myeloma connection.
I don't know... cult is such a negative term for people that I believe are just trying to help others.
Everybody has to make their own choice for treatment. There is no need to belittle them after they've done that. And implying that someone is a cult member is doing that. Your writings on this topic just seem too personal to me.
I'm sorry about that.
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Jesse White
Re: Report on Myeloma Trials at UAMS / Arkansas
If I might say something on this 'thread' which actually has been running all fall....I don't live in the US, and it isn't my experience to have so many choices of cancer centres for seeking treatment. I am very fortunate to live in a large city with an excellent cancer treatment centre. My doctors are haematological oncologists, who treat myeloma as well as other blood cancers. They have to be 'well rounded' since we do not have a large enough population to have a unit just for myeloma/amyloidosis. Some of the doctors here do treat mostly myeloma patients though, and some are primarily working in 'transplants'. And we have a universal health care system here, so private insurance is not an issue for us. We do not have different centres to choose from due to having private insurance, if that makes sense. We could seek treatment in another province, or pay out of pocket to go to another country. I doubt very much if many of us would go out of country, for myeloma therapy is extremely expensive (even the drugs used are beyond the affordability of most patients).
I have met patients who have no choice but to come into our city to seek treatment, from centres of smaller populations. That is a lot more stress for them actually, than just living a short drive from treatment.
If there is a large enough population to support a treatment centre just for the diseases surrounding multiple myeloma, then it would seem natural that such a centre might be there.
I wouldn't know how the centres compared as to treatments. I do enjoy reading the Beacon, which is a window on the wide world of differing approaches to myeloma therapy. We probably all do learn a lot from that! So that's my 'spin' on it all!
I have met patients who have no choice but to come into our city to seek treatment, from centres of smaller populations. That is a lot more stress for them actually, than just living a short drive from treatment.
If there is a large enough population to support a treatment centre just for the diseases surrounding multiple myeloma, then it would seem natural that such a centre might be there.
I wouldn't know how the centres compared as to treatments. I do enjoy reading the Beacon, which is a window on the wide world of differing approaches to myeloma therapy. We probably all do learn a lot from that! So that's my 'spin' on it all!
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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 / Arkansas
Hi Jesse,
I agree, whether anyone agrees about aspects of a cult is irrelevant and ridiculous.
We should focus on the thread topic which was about the incidence of mortality at MIRT and the IRB controversy that ensued as well.
Let's re-focus:
"The proportion of deaths attributed to “unknown” causes in TT studies is 25-37%. This is dramatically higher than that reported in other published studies. Figure 1 shows the proportion of deaths from “other” or “unknown” causes in several published myeloma studies, and depicts the extraordinarily high proportion of patients on TT studies who have apparently died of “unknown” or “other” causes (details in Appendix 1). The terms “other” and “unknown” have been used interchangeably by MIRT investigators in different publications to describe causes of death. Most of these non-TT myeloma studies are multi-center studies. With multi-center studies, the likelihood of unknown or missing information is usually higher than with single-center studies such as the TT studies from MIRT. Yet, the opposite is seen here."
and
"Patients enrolled on studies in Arkansas have an unusually high propensity to die of unknown" or "indeterminate" or "other" causes. This happened to 13% of all participants corresponding to 29% of all deaths) in the Total Therapy 2 study [1] and to 8% of all participants (corresponding to 30% of all deaths) in the Total Therapy 3 study [2]. Indeed, 13% of all patients with smoldering myeloma (corresponding to 56% of all deaths) who received thalidomide died of "unrelated" causes [3] that remain unclear [4]!
These mystery deaths are oddly out of keeping with the statement in their latest work looking at second malignancies [5]: "This uniform stringency in therapy and subsequent patient follow-up is a hallmark of the TT trials program and has afforded the investigators to make many clinically meaningful and novel observations.""
and this:
"All IRB meetings and materials are supposed to be confidential. Members, as Valentine put it, pledge to maintain “graveyard silence.”
But by early 2005, frustration with Barlogie’s conduct — and what was seen by some IRB members as a failure of UAMS administrators to hold him accountable — prompted some members to break that silence.
Members who spoke to the Arkansas Times on a condition of anonymity said they and others complained for at least two years that Barlogie was not adhering to UAMS and federal standards.
Specifically, they charged that Barlogie was changing the treatment plans, or protocols of some patients enrolled in his studies, and that he was doing this on his own, without obtaining proper approval.
One source reported that Valentine’s immediate predecessor, former IRB chair Dr. Marisue Cody, a Ph.D. nurse, had fought a vigorous but losing battle to have Barlogie comply with IRB demands. The source said that Cody not only failed to win the backing of UAMS administrators, but that she was ultimately “canned” as IRB chair by Dr. Larry A. Milne, the university’s vice chancellor for academic affairs and research administration."
These are the core issues that were raised and we should stick with them. And not spend time lauding or not lauding a particular program that is different due to having patients on a regimen unique to the institute.
I agree, whether anyone agrees about aspects of a cult is irrelevant and ridiculous.
We should focus on the thread topic which was about the incidence of mortality at MIRT and the IRB controversy that ensued as well.
Let's re-focus:
"The proportion of deaths attributed to “unknown” causes in TT studies is 25-37%. This is dramatically higher than that reported in other published studies. Figure 1 shows the proportion of deaths from “other” or “unknown” causes in several published myeloma studies, and depicts the extraordinarily high proportion of patients on TT studies who have apparently died of “unknown” or “other” causes (details in Appendix 1). The terms “other” and “unknown” have been used interchangeably by MIRT investigators in different publications to describe causes of death. Most of these non-TT myeloma studies are multi-center studies. With multi-center studies, the likelihood of unknown or missing information is usually higher than with single-center studies such as the TT studies from MIRT. Yet, the opposite is seen here."
and
"Patients enrolled on studies in Arkansas have an unusually high propensity to die of unknown" or "indeterminate" or "other" causes. This happened to 13% of all participants corresponding to 29% of all deaths) in the Total Therapy 2 study [1] and to 8% of all participants (corresponding to 30% of all deaths) in the Total Therapy 3 study [2]. Indeed, 13% of all patients with smoldering myeloma (corresponding to 56% of all deaths) who received thalidomide died of "unrelated" causes [3] that remain unclear [4]!
These mystery deaths are oddly out of keeping with the statement in their latest work looking at second malignancies [5]: "This uniform stringency in therapy and subsequent patient follow-up is a hallmark of the TT trials program and has afforded the investigators to make many clinically meaningful and novel observations.""
and this:
"All IRB meetings and materials are supposed to be confidential. Members, as Valentine put it, pledge to maintain “graveyard silence.”
But by early 2005, frustration with Barlogie’s conduct — and what was seen by some IRB members as a failure of UAMS administrators to hold him accountable — prompted some members to break that silence.
Members who spoke to the Arkansas Times on a condition of anonymity said they and others complained for at least two years that Barlogie was not adhering to UAMS and federal standards.
Specifically, they charged that Barlogie was changing the treatment plans, or protocols of some patients enrolled in his studies, and that he was doing this on his own, without obtaining proper approval.
One source reported that Valentine’s immediate predecessor, former IRB chair Dr. Marisue Cody, a Ph.D. nurse, had fought a vigorous but losing battle to have Barlogie comply with IRB demands. The source said that Cody not only failed to win the backing of UAMS administrators, but that she was ultimately “canned” as IRB chair by Dr. Larry A. Milne, the university’s vice chancellor for academic affairs and research administration."
These are the core issues that were raised and we should stick with them. And not spend time lauding or not lauding a particular program that is different due to having patients on a regimen unique to the institute.
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Report on Myeloma Trials at UAMS / Arkansas
Susie, Susie, Susie, does it really matter! Is't what this thread is talking about just a bunch of noise, and the really important fact being missed hear is that the MIRT results are excellent not matter how they are viewed. Some times we just can not see the forest for the trees, or we forget that the when you up to your eyeballs in alligators we often forget that the original objective was to drain the swamp. I wrote a while ago on this very thread the following:
How do we define CURE? What total death rate would be considered cure? Using the death rate as a measure, how might we definition cure? If I were to have a go at it, I would say that it might be if the average myeloma patient lives as long or longer than the average American of the same age. So if you were at the age of the average myeloma patient or 70 years of age, you would want to live another 16 years to 86, as calculated by the Social Security actuarial death rate tables. The table of deaths for the UAMS TT2 multiple myeloma protocol that is being discussed here is for 12 years and is as follows:
Myeloma-related mortality - 163/668
Mortality causes unknown - 89/668
Treatment-related mortality - 51/668
Total deaths - 303/668 = 45.3%
Therefore the death rate for TT2 for this 12 year period is 45.3% of the patients, however if you are just an average run of the mill American at age 70 (which is the average age of a myeloma patient) the death rate is 45.0% based on these same actuarial tables. So no matter how you slice the total deaths into this or that bucket, the total number of deaths are at the definition of CURE as I defined it above. What is crazy about this is that TT3 has better results and probably shows a survival for patients greater than that for the average American. One other interesting point is that this kind of performance is being reported in other myeloma specialists data. Dr. Berenson's is close to this cure definition, and I believe there will be many more that will show similar results in the future.
So to ask the question again? Does it really matter when the results cry success! Someone else had noted that they have read your other posts and have found them quite helpful and informative, except when it comes to this subject. I have noticed the same exact thing, and it is inconsistent to say the least. Best Regards/Gary
How do we define CURE? What total death rate would be considered cure? Using the death rate as a measure, how might we definition cure? If I were to have a go at it, I would say that it might be if the average myeloma patient lives as long or longer than the average American of the same age. So if you were at the age of the average myeloma patient or 70 years of age, you would want to live another 16 years to 86, as calculated by the Social Security actuarial death rate tables. The table of deaths for the UAMS TT2 multiple myeloma protocol that is being discussed here is for 12 years and is as follows:
Myeloma-related mortality - 163/668
Mortality causes unknown - 89/668
Treatment-related mortality - 51/668
Total deaths - 303/668 = 45.3%
Therefore the death rate for TT2 for this 12 year period is 45.3% of the patients, however if you are just an average run of the mill American at age 70 (which is the average age of a myeloma patient) the death rate is 45.0% based on these same actuarial tables. So no matter how you slice the total deaths into this or that bucket, the total number of deaths are at the definition of CURE as I defined it above. What is crazy about this is that TT3 has better results and probably shows a survival for patients greater than that for the average American. One other interesting point is that this kind of performance is being reported in other myeloma specialists data. Dr. Berenson's is close to this cure definition, and I believe there will be many more that will show similar results in the future.
So to ask the question again? Does it really matter when the results cry success! Someone else had noted that they have read your other posts and have found them quite helpful and informative, except when it comes to this subject. I have noticed the same exact thing, and it is inconsistent to say the least. Best Regards/Gary
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gary P
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