I have a question as to why people are so vicious in their responses? Treatment decisions are a patients own to make and each person has decide what is best for them..... I for one have decided to allow Dr. Barlogie and MIRT treat me. I am in their SWOG 120 MGUS study since 2010, I am very happy with his treatment of me and his recomendations for further testing.
People to lighten up and stop yelling at each other!
Forums
Why is it important to ask questions?
People - medical professionals and patients - usually believe that if something is published, it must be accurate. That need not necessarily be so.
I am citing this episode to show why, if there are concerns, questions must be asked and detailed, accurate answers pursued vigorously.
Those who are interested should look at the attachments which have all the details, but here is a short summary:
A paper published in Blood from Tunisia evaluating single versus tandem transplantation looked biologically implausible. I corresponded extensively with Blood pointing out my concerns. However, after repeated internal and external review by Blood and consultants it commissioned, the paper was deemed to be fine - and was eventually published. Investigations eventually suggested that the paper was inaccurate (perhaps fraudulent) - and was retracted. A companion paper was retracted from Bone Marrow Transplantation. An "Expression of Concern" was published concerning two other studies from the same group that I found odd in the journals Thrombosis and Haemostasis and Journal of Clinical Oncology.
I believe in intensive therapy for multiple myeloma, including tandem transplantation. However, I believe complete transparency in reporting results is essential for patient welfare and advancement of science.
Jayesh Mehta MD
Professor of Medicine
Director, Hematopoietic Stem Cell Transplantation Program
The Robert H Lurie Comprehensive Cancer Center
Northwestern University Feinberg School of Medicine
Chicago
I am citing this episode to show why, if there are concerns, questions must be asked and detailed, accurate answers pursued vigorously.
Those who are interested should look at the attachments which have all the details, but here is a short summary:
A paper published in Blood from Tunisia evaluating single versus tandem transplantation looked biologically implausible. I corresponded extensively with Blood pointing out my concerns. However, after repeated internal and external review by Blood and consultants it commissioned, the paper was deemed to be fine - and was eventually published. Investigations eventually suggested that the paper was inaccurate (perhaps fraudulent) - and was retracted. A companion paper was retracted from Bone Marrow Transplantation. An "Expression of Concern" was published concerning two other studies from the same group that I found odd in the journals Thrombosis and Haemostasis and Journal of Clinical Oncology.
I believe in intensive therapy for multiple myeloma, including tandem transplantation. However, I believe complete transparency in reporting results is essential for patient welfare and advancement of science.
Jayesh Mehta MD
Professor of Medicine
Director, Hematopoietic Stem Cell Transplantation Program
The Robert H Lurie Comprehensive Cancer Center
Northwestern University Feinberg School of Medicine
Chicago
- Attachments
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BMT retraction.pdf- (50.04 KiB) Downloaded 83 times
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- Blood retraction.pdf
- (135.79 KiB) Downloaded 114 times
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- Retraction article April 2011.pdf
- (121.43 KiB) Downloaded 57 times
Last edited by jmehta on Sat Oct 06, 2012 1:07 pm, edited 1 time in total.
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jmehta - Name: Jayesh Mehta MD
Re: Report on Myeloma Trials at UAMS
I am with Pat Killingsworth on this one! I personally believe that all myeloma specialists are either some of the most selfless, caring, committed, tireless, knowledgable, skilled, and yes saintly medical professionals in the world, or they are all just plain "NUTS". Let me ask each of you if you would sign up to be myeloma specialist after committing most of your life to learning to become a hematology oncologist. To be a myeloma specialist you are walking into this set of circumstances.
1) You are going to specialize in a disease that has very few patients. Where is the income potential? Wouldn't the breast or colon be a better place to specialize?
2) Most people believe your patients won't be around that long! Not too many repeat customers!
3) To get a good number of patients you need to be in a big city (usually), and at a well known hospital with a reputation which will attract customers. So to get there you have to be very good! You have to really want it!
4) At this larger institution because you still have few customers, you probably do not get the resources that the breast and colon doctors get.
5) If you are into the use of transplant in your treatment plan, you require a lot of resources to do your job effectively (4 and 5 is a Catch 22).
6) If you are at the tip of the spear in thought and performance, and at extremes of the treatment continuum you are open for constant critique and criticism- the Berensons and Barlogies of the world.
I have had the honor of talking to a number of these myeloma professionals, and they are the most committed medical professionals in the world, and we all should feel blessed that they are out there every day fighting to save our as**s. These specialists are giving us the extra years of life that we need to finally find a cure for all of us. May God Bless all of us who are on this myeloma journey! Gary Petersen
1) You are going to specialize in a disease that has very few patients. Where is the income potential? Wouldn't the breast or colon be a better place to specialize?
2) Most people believe your patients won't be around that long! Not too many repeat customers!
3) To get a good number of patients you need to be in a big city (usually), and at a well known hospital with a reputation which will attract customers. So to get there you have to be very good! You have to really want it!
4) At this larger institution because you still have few customers, you probably do not get the resources that the breast and colon doctors get.
5) If you are into the use of transplant in your treatment plan, you require a lot of resources to do your job effectively (4 and 5 is a Catch 22).
6) If you are at the tip of the spear in thought and performance, and at extremes of the treatment continuum you are open for constant critique and criticism- the Berensons and Barlogies of the world.
I have had the honor of talking to a number of these myeloma professionals, and they are the most committed medical professionals in the world, and we all should feel blessed that they are out there every day fighting to save our as**s. These specialists are giving us the extra years of life that we need to finally find a cure for all of us. May God Bless all of us who are on this myeloma journey! Gary Petersen
Re: Report on Myeloma Trials at UAMS
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.
Best Regards/Gary Petersen
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.
Best Regards/Gary Petersen
Re: Report on Myeloma Trials at UAMS
Gary,
Just at first glance I would say that a 55% survival at 12 years is pretty darn good. In this new day of REV. warnings with secondary cancers, we need all the information we can get. I am not familiar with your treatment history? Are you still on maintenance?
I do know, that the one thing that really slows down research is lack of control in studies. If you have more than one variable, you don't know which one caused the change in the patient.
The problem with written forums, is interpretation is lost. I really upset Nick, not my intention, and feel pretty rotten about adding any stress to his life.
But to address the cost issue, multiple myeloma for 5 years. Nine months of chemo, a little dialysis and an auto. No maintenance. Kidneys close to normal. Very fortunate to still be in CR. Total cost today, around $250,000(my transplant was 125,000). I know, because even though we get insurance through employer, we pay 9600 of the policy plus a 5000 deductible each and every year. Yes, that bites. How does that compare to costs for others?
Another relation to the cost issue, the story in the Beacon on maybe a blood test would be all we need to monitor patients. I vote for ending the 24 hr pee test!!!!!!!!!!
One thing I would think we could all agree on, is make sure you go to a multiple myeloma specially treatment center. That is a must. With all the great doctors out there, find one that aligns with your quality of life stance.
Just at first glance I would say that a 55% survival at 12 years is pretty darn good. In this new day of REV. warnings with secondary cancers, we need all the information we can get. I am not familiar with your treatment history? Are you still on maintenance?
I do know, that the one thing that really slows down research is lack of control in studies. If you have more than one variable, you don't know which one caused the change in the patient.
The problem with written forums, is interpretation is lost. I really upset Nick, not my intention, and feel pretty rotten about adding any stress to his life.
But to address the cost issue, multiple myeloma for 5 years. Nine months of chemo, a little dialysis and an auto. No maintenance. Kidneys close to normal. Very fortunate to still be in CR. Total cost today, around $250,000(my transplant was 125,000). I know, because even though we get insurance through employer, we pay 9600 of the policy plus a 5000 deductible each and every year. Yes, that bites. How does that compare to costs for others?
Another relation to the cost issue, the story in the Beacon on maybe a blood test would be all we need to monitor patients. I vote for ending the 24 hr pee test!!!!!!!!!!
One thing I would think we could all agree on, is make sure you go to a multiple myeloma specially treatment center. That is a must. With all the great doctors out there, find one that aligns with your quality of life stance.
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jjc
Re: Report on Myeloma Trials at UAMS / Arkansas
Doesn't anyone know what a TT program of treatments cost at UMAS? Even just the first year of treatment would be helpful.
I was so hoping those that went thru UMAS TT treatment and now are off maintenance would be able to write and tell us about it.
I seem to just know of those still on maintenance, and I know there has to be many that are off it according to the results.
I was so hoping those that went thru UMAS TT treatment and now are off maintenance would be able to write and tell us about it.
I seem to just know of those still on maintenance, and I know there has to be many that are off it according to the results.
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jjc
Re: Report on Myeloma Trials at UAMS / Arkansas
JJC: giving a meaning estimate of the first year's cost of TT would be almost impossible to quote and could be very misleading without a great deal of information. Low Risk? Amount of bone deterioration? High Risk? TT-4? TT-5? In protocol? Out of protocol? Whether prior treatment or not? Type of insurance coverage? Travel cost? etc etc. I can tell you that they are extremely helpful working with insurance companies and disability applications. I would suggest that anyone interested in MIRT should first take a good look at myeloma.uams.edu then contact them directly for an appointment/evaluation and see what the treatment options are. It is well worth a few days testing in Little Rock to get a complete test evaluation and find out what your options may be. I might note that they have volunteers who do a good job of hand holding through much of the evaluation process. I also understand that they have "Ambassadors", graduated patients scattered around the county, that you can talk to and get good first hand patient input.
Re: Report on Myeloma Trials at UAMS / Arkansas
Chuck,
I just think patients need to compare costs. Just because insurance is paying the bill, we still need to be aware of the costs. How else are we going to keep healthcare costs from rising out of control?
So to make it simple. How much have you spent at UMAS on treatment? Or anyone that has gone there. I just want to compare it to other treatment centers. If no one is comparing costs, someone needs to start.
Or how much did the year cost for treatment at UMAS that you did the double transplant?
Maybe someone has already compare costs for treatment centers, and could post a link.
TIA.
Keep it simple. My multiple myeloma discovered 9-07. Nine months Velcade/dex. Auto transplant at Mayo. transplant was 125,000(that includes 5000 my insurance company allowed for housing--outpatient transplant). total cost to date right at 250,000- I had kidney damage, did a little dialysis, but kidneys are functioning adequately now. No maintenance, just labs every three months and normal check ups. For the last four years, my insurance has paid out less than the premiums I may in.
I just think patients need to compare costs. Just because insurance is paying the bill, we still need to be aware of the costs. How else are we going to keep healthcare costs from rising out of control?
So to make it simple. How much have you spent at UMAS on treatment? Or anyone that has gone there. I just want to compare it to other treatment centers. If no one is comparing costs, someone needs to start.
Or how much did the year cost for treatment at UMAS that you did the double transplant?
Maybe someone has already compare costs for treatment centers, and could post a link.
TIA.
Keep it simple. My multiple myeloma discovered 9-07. Nine months Velcade/dex. Auto transplant at Mayo. transplant was 125,000(that includes 5000 my insurance company allowed for housing--outpatient transplant). total cost to date right at 250,000- I had kidney damage, did a little dialysis, but kidneys are functioning adequately now. No maintenance, just labs every three months and normal check ups. For the last four years, my insurance has paid out less than the premiums I may in.
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jjc
Re: Report on Myeloma Trials at UAMS / Arkansas
Since, as far as I know, UAMS utilizes tandem (double) stem cell transplants as a core part of their approach to myeloma treatment, I thought this newly published research might be relevant to the discussion here:
Title: High-dose chemotherapy plus single vs tandem autologous transplantation as initial treatment for multiple myeloma
Published: October 17, 2012
Link: http://summaries.cochrane.org/CD004626/high-dose-chemotherapy-plus-single-vs-tandem-autologous-transplantation-as-initial-treatment-for-multiple-myeloma
Conclusion: "We did not consider any [of the 14 studies reviewed] to be sufficiently informative for contemporary treatment decisions concerning the question single versus tandem ASCT in view of inherent biases. In addition, none of the trials integrated the so-called "novel agents" which are now considered standard treatment for multiple myeloma. To improve the quality of future studies, sample size calculations should consider the potentially steep decrease in compliance with the second ASCT. Reporting of results of treatment- or transplantation-related mortality should clearly specify the type and number of events (the numerator) in a well-defined population (the denominator)."
Title: High-dose chemotherapy plus single vs tandem autologous transplantation as initial treatment for multiple myeloma
Published: October 17, 2012
Link: http://summaries.cochrane.org/CD004626/high-dose-chemotherapy-plus-single-vs-tandem-autologous-transplantation-as-initial-treatment-for-multiple-myeloma
Conclusion: "We did not consider any [of the 14 studies reviewed] to be sufficiently informative for contemporary treatment decisions concerning the question single versus tandem ASCT in view of inherent biases. In addition, none of the trials integrated the so-called "novel agents" which are now considered standard treatment for multiple myeloma. To improve the quality of future studies, sample size calculations should consider the potentially steep decrease in compliance with the second ASCT. Reporting of results of treatment- or transplantation-related mortality should clearly specify the type and number of events (the numerator) in a well-defined population (the denominator)."
Re: Report on Myeloma Trials at UAMS / Arkansas
That would be a great study, but unfortunately it must not include Total Therapy 3+, which are the UAMS trials that are indicative of curative potential. The abstract states "none of the trials integrated the so-called "novel agents" which are now considered standard treatment for multiple myeloma." TT3 and 4 both include Velcade, Revlimid and Thalidomide.
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