It is true that Susie has some of the best, most informative comments on this website. She often responds to questions from new patients, and directs them to studies or articles on their subjects. I have personally benefitted from her writing.
My experience at UAMS was a very good one. I was on the TT protocol, but the doctor was quick to take me off it when he thought I would do better otherwise. I am now well treated at home, but I miss the expertise and attention available in AR.
This forum is a great place to talk about each of our experiences with treatment, and applicable research. It is not, though, a constructive place to publicize papers on the adequacy or inadequacy of any institution's research. Most institutions aren't going to publish research or critical responses in a blog or website, so the presentation would be one-sided.
I think we can all agree that it helps us patients when there are a diversity of multiple myeloma approoaches being tried around the country. Some approaches are more controversial, some are less. In the long run this diversity of approaches will help find the most effective alternatives.
Forums
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Arizonan - Name: Arizonan
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2010
- Age at diagnosis: 54
The questions clarified
There is obviously a lot of emotion related to the concerns raised. I suggest people look at this dispassionately. The questions are legitimate scientific questions which get asked all the time. There is nothing in the report that is other than a factual presentation of published data or questions related to that. No disparaging comments have been made.
People have focused on the exceptional 45% 12-year survival. Let's look at 3 extreme scenarios from 3 hypothetical centers performing a clinical trial (where accurate and complete recording of data and outcomes is essential):
A. The 55% of patients who have died all died of toxicity.
B. The 55% of patients who have died all died of relapse (myeloma).
C. We don't know the causes of death for 55% of patients who died.
Despite identical survival, which of the 3 scenarios is most attractive? Which of the 3 centers is one most likely to view with some concern?
The next question is obvious. If one had to rate the reliability of the 45% survival reported - bearing in mind that this is self-reported - which of the 3 centers is one likely to consider least reliable?
"Unknown" or "other" deaths do occur. However, the proportion on clinical trials that are conducted carefully is small. These deaths have been peppered through the course of TT2 - starting a few months into the study - if you look carefully at the survival curve from JCO.
If the proportion is very high, it indicates potential carelessness (in patient care and/or data monitoring) or incomplete reporting (causes of death known but not revealed). These are troubling scenarios.
I am a firm believer in intensive therapy including tandem transplantation. If MIRT data are carefully and completely audited and satisfactory explanations found for all the concerns raised, a lot of non-believers will turn into believers.
People have focused on the exceptional 45% 12-year survival. Let's look at 3 extreme scenarios from 3 hypothetical centers performing a clinical trial (where accurate and complete recording of data and outcomes is essential):
A. The 55% of patients who have died all died of toxicity.
B. The 55% of patients who have died all died of relapse (myeloma).
C. We don't know the causes of death for 55% of patients who died.
Despite identical survival, which of the 3 scenarios is most attractive? Which of the 3 centers is one most likely to view with some concern?
The next question is obvious. If one had to rate the reliability of the 45% survival reported - bearing in mind that this is self-reported - which of the 3 centers is one likely to consider least reliable?
"Unknown" or "other" deaths do occur. However, the proportion on clinical trials that are conducted carefully is small. These deaths have been peppered through the course of TT2 - starting a few months into the study - if you look carefully at the survival curve from JCO.
If the proportion is very high, it indicates potential carelessness (in patient care and/or data monitoring) or incomplete reporting (causes of death known but not revealed). These are troubling scenarios.
I am a firm believer in intensive therapy including tandem transplantation. If MIRT data are carefully and completely audited and satisfactory explanations found for all the concerns raised, a lot of non-believers will turn into believers.
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jmehta - Name: Jayesh Mehta MD
Re: Report on Myeloma Trials at UAMS / Arkansas
Dr Mehta
I dont doubt that these are legitimate issues you are raising, but you are pursuing them in the wrong forum. It would be interesting to see it in a medical journal, with a response from UAMS. But this is a patients' blog. It is extremely unlikely any institution is going to respond to detailed criticism in this forum.
.
I dont doubt that these are legitimate issues you are raising, but you are pursuing them in the wrong forum. It would be interesting to see it in a medical journal, with a response from UAMS. But this is a patients' blog. It is extremely unlikely any institution is going to respond to detailed criticism in this forum.
.
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Arizonan - Name: Arizonan
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2010
- Age at diagnosis: 54
Re: Report on Myeloma Trials at UAMS / Arkansas
If you look carefully, I did not start the discussion. I posted only when Dr Barlogie posted (after, of course, a legal notice was served on the Beacon!). You should also note - from the published literature - that concerns raised about the work of UAMS in medical journals are usually ignored by UAMS.
Since the forum deals with myeloma (it's not a "patients' blog"), it is not a bad place at all to have an incisive discussion (journals, sadly, are too stodgy to have debates).
My last post was to get people to focus on the issues - rather than calling each other names.
Arizonan wrote:
> Dr Mehta
>
> I dont doubt that these are legitimate issues you are raising, but you are
> pursuing them in the wrong forum. It would be interesting to see it in a
> medical journal, with a response from UAMS. But this is a patients' blog.
> It is extremely unlikely any institution is going to respond to detailed
> criticism in this forum.
.
Since the forum deals with myeloma (it's not a "patients' blog"), it is not a bad place at all to have an incisive discussion (journals, sadly, are too stodgy to have debates).
My last post was to get people to focus on the issues - rather than calling each other names.
Arizonan wrote:
> Dr Mehta
>
> I dont doubt that these are legitimate issues you are raising, but you are
> pursuing them in the wrong forum. It would be interesting to see it in a
> medical journal, with a response from UAMS. But this is a patients' blog.
> It is extremely unlikely any institution is going to respond to detailed
> criticism in this forum.
.
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jmehta - Name: Jayesh Mehta MD
Re: Report on Myeloma Trials at UAMS / Arkansas
Dr Mehta notes the following:
"I am a firm believer in intensive therapy including tandem transplantation. If MIRT data are carefully and completely audited and satisfactory explanations found for all the concerns raised, a lot of non-believers will turn into believers."
I agree with that -- although I personally have not chosen TT; instead I am hoping to achieve sCR (or better, based e.g., on immunological criteria) by taking "novel" agents such as Revlimid, etc. I think getting to sCR is the key, and it may not matter how you get there, so long as the diagnostic criteria are consistent and rigorous.
But it is this hope that leads to my point: I think UAMS could greatly further its cause by discussing the results in patients with low risk achieving sCR -- not just the result of all low-risk patients going through TT. I don't know if they have rigorously or systematically done that.
I say this, because I wonder if the long-term results from such a sub-analysis would point to long-lasting remission with a median approaching two decades - consistent with cure -- results that would gibe with those recently reported in the study from India on this website.
I also wonder if total therapy will soon be including carfilzomib and pomalidomide in the initial total mix? Let's be honest: TT is a kitchen sink approach after all......
I also wonder why UAMS does not develop allo transplants more systematically.
"I am a firm believer in intensive therapy including tandem transplantation. If MIRT data are carefully and completely audited and satisfactory explanations found for all the concerns raised, a lot of non-believers will turn into believers."
I agree with that -- although I personally have not chosen TT; instead I am hoping to achieve sCR (or better, based e.g., on immunological criteria) by taking "novel" agents such as Revlimid, etc. I think getting to sCR is the key, and it may not matter how you get there, so long as the diagnostic criteria are consistent and rigorous.
But it is this hope that leads to my point: I think UAMS could greatly further its cause by discussing the results in patients with low risk achieving sCR -- not just the result of all low-risk patients going through TT. I don't know if they have rigorously or systematically done that.
I say this, because I wonder if the long-term results from such a sub-analysis would point to long-lasting remission with a median approaching two decades - consistent with cure -- results that would gibe with those recently reported in the study from India on this website.
I also wonder if total therapy will soon be including carfilzomib and pomalidomide in the initial total mix? Let's be honest: TT is a kitchen sink approach after all......
I also wonder why UAMS does not develop allo transplants more systematically.
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Dan D
Re: Report on Myeloma Trials at UAMS / Arkansas
Hi Arizonian,
I hope all is well with you. I did post links earlier in the forum of instances where these issues were brought up in professional journals. This thread has over 4000 views (and counting!) so it is definitely generating interest by a lot of the readers. The reason that I pointed this out in the first place is that I know few patients actually look at the journals. How many patients do you think saw the the postings in the journals that showed "total therapy2" had a 14% non relapse mortality? I doubt many had. I would also note that I am in no way against intensive thereapy. I did the most intensive treatment available - a full allo transplant in first CR.
Do not forget myeloma is big business. Note that Dr. Barlogie did respond in this thread. Knowing that cancer therapy is big business I would think they are more likely to address something like this in a Forum like this one where potential customers read. I would think UAMS would want patients to believe "total therapy" is a cure more than other Doctors. If I believed "total therapy" was a cure or if I would have recieved better care at UAMS I would have gone there. That likely matters more to them than convincing other Doctors that "total therapy" has a positive risk vs reward ratio. We are the potential customers they are marketing to and not many patients are regular readers of medical journals.
Mark
I hope all is well with you. I did post links earlier in the forum of instances where these issues were brought up in professional journals. This thread has over 4000 views (and counting!) so it is definitely generating interest by a lot of the readers. The reason that I pointed this out in the first place is that I know few patients actually look at the journals. How many patients do you think saw the the postings in the journals that showed "total therapy2" had a 14% non relapse mortality? I doubt many had. I would also note that I am in no way against intensive thereapy. I did the most intensive treatment available - a full allo transplant in first CR.
Do not forget myeloma is big business. Note that Dr. Barlogie did respond in this thread. Knowing that cancer therapy is big business I would think they are more likely to address something like this in a Forum like this one where potential customers read. I would think UAMS would want patients to believe "total therapy" is a cure more than other Doctors. If I believed "total therapy" was a cure or if I would have recieved better care at UAMS I would have gone there. That likely matters more to them than convincing other Doctors that "total therapy" has a positive risk vs reward ratio. We are the potential customers they are marketing to and not many patients are regular readers of medical journals.
Mark
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Mark
Re: Report on Myeloma Trials at UAMS / Arkansas
Well said Mark!!
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Report on Myeloma Trials at UAMS / Arkansas
I told myself I would not get involved in this tread again, but I just can't control myself. When you show someone the forest, the rivers running through it, and the beautiful wildlife in the forest and they still can only see the trees you just have to try one last time.
Unless UAMS is lying about their results, and the people that certify their results and many other peoples clinical trial results as well also lied (Crab.com or Cancer Research and Biostatistics), then their results are still exceptional. Also there are only a handful of programs that can claim such success. Many programs do not even know or collect their survival data, or as one highly regarded program stated "One of our great failings as a program is that we do not have a wonderful database. We can give you the numbers of pts, but survival data would be harder to come by."
I am with Arizonian, in that I would hope that one day the CRd and maintenance will be the new CURE signature for myeloma without transplant, but we won't know for another 10 years. The very interesting observation is than even the TT programs at UAMS continue to decrease the intensity of treatment as the new novel drugs are added to the mix, and the results continue to show drastic improvement. So I am hoping the Arizonian is right, for the sake of all of us. Best Regards/Gary
Unless UAMS is lying about their results, and the people that certify their results and many other peoples clinical trial results as well also lied (Crab.com or Cancer Research and Biostatistics), then their results are still exceptional. Also there are only a handful of programs that can claim such success. Many programs do not even know or collect their survival data, or as one highly regarded program stated "One of our great failings as a program is that we do not have a wonderful database. We can give you the numbers of pts, but survival data would be harder to come by."
I am with Arizonian, in that I would hope that one day the CRd and maintenance will be the new CURE signature for myeloma without transplant, but we won't know for another 10 years. The very interesting observation is than even the TT programs at UAMS continue to decrease the intensity of treatment as the new novel drugs are added to the mix, and the results continue to show drastic improvement. So I am hoping the Arizonian is right, for the sake of all of us. Best Regards/Gary
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Gary P
Re: Report on Myeloma Trials at UAMS / Arkansas
Gary,
I like your analogy, so let me run with it a bit further ...
You suggest that we keep in mind the big picture -- that we shouldn't just focus on the trees in the idyllic picture, but on the "forest, the rivers running through it, and the beautiful wildlife in the forest" in the picture.
But what Dr. Mehta is saying is: "Hey, look more closely at the picture. Look at those leaves. They're not green. They're purple!"
And based on that, he's saying "Hey, if the leaves on the tree are purple, maybe we need to be concerned that the river in the picture is polluted, and the beautiful wildlife you see in the picture is actually fake."
I hear what you're saying. You feel that, because the picture was checked by someone else, it doesn't matter that the leaves are purple. That just must be the color of the leaves on that particular kind of trees, and we shouldn't assume that purple leaves imply that other parts of the picture are different than what we're assuming.
Maybe.
Or maybe the people checking the picture didn't do such a great job, and the purple leaves are, in fact, a tip off that more things are out of whack with the picture than first meets the eye.
I'm glad that Dr. Mehta is asking the questions that he's asking. In fact, I think we all should be glad. Science won't move forward nearly as fast if certain scientists are given "you don't have to defend your data" passes, making them immune to questions and criticism.
I like your analogy, so let me run with it a bit further ...
You suggest that we keep in mind the big picture -- that we shouldn't just focus on the trees in the idyllic picture, but on the "forest, the rivers running through it, and the beautiful wildlife in the forest" in the picture.
But what Dr. Mehta is saying is: "Hey, look more closely at the picture. Look at those leaves. They're not green. They're purple!"
And based on that, he's saying "Hey, if the leaves on the tree are purple, maybe we need to be concerned that the river in the picture is polluted, and the beautiful wildlife you see in the picture is actually fake."
I hear what you're saying. You feel that, because the picture was checked by someone else, it doesn't matter that the leaves are purple. That just must be the color of the leaves on that particular kind of trees, and we shouldn't assume that purple leaves imply that other parts of the picture are different than what we're assuming.
Maybe.
Or maybe the people checking the picture didn't do such a great job, and the purple leaves are, in fact, a tip off that more things are out of whack with the picture than first meets the eye.
I'm glad that Dr. Mehta is asking the questions that he's asking. In fact, I think we all should be glad. Science won't move forward nearly as fast if certain scientists are given "you don't have to defend your data" passes, making them immune to questions and criticism.
Re: Report on Myeloma Trials at UAMS / Arkansas
Ricardo, MAYBE! I really like your analogy of my analogy! What would the world be like without police and judges? Best Regards/Gary
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Gary P
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