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Re: Report on Myeloma Trials at UAMS
Thanks for your reply, Nick. I hope that the myeloma stays inactive too, of course! I do realize that I am fortunate though in the larger world of types of myeloma, not to be 'high risk' for chromosomal problems. The whole field is a fascinating area of medicine though, although little known outside the relatively small patient group (1.3% of cancers; 10% of blood cancers). I sure didn't know much about it, although I do have two friends in my local support group whom I have known each for about 25 years! I would not have had the exposure to all the differing treatments available outside Canada were it not for the Beacon, I think. However, my feeling is that the oncologists working on multiple myeloma all consult with each other, through conferences, reading each other's papers, etc. I have had the pleasure of meeting some of these doctors too, locally and at patient information conferences. If you go to those meetings, you can actually get a chance to chat with some of the leading experts in the field! I just went to a meeting in Winnipeg, put on by the Manitoba Cancer Care folks, in cooperation with Myeloma Canada, which is a patient driven group that tries to help to coordinate national issues (such as drug approvals!). Among the speakers, there were two docs from the Mayo Clinic. That clinic seems to have good educational out reach...it is not the first time I have heard speakers from there. Right now, it would be great to see Carfilzomib approved here. There are tandem stem cell transplants done here also, for some patients, although I don't think it is the norm. Like you said, it depends on the individual patient as to what is suggested for their treatment.
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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
Dear Nick, Nancy, et al.,
I am so grateful for your research, wisdom, and encouragement. When I was first diagnosed, I was so stunned and so ill that I just left myself in the hands of God. Thank Heaven (literally!) that He steered me in the right direction, and that I was delivered into the hands of a specialist who broke protocol and tailored her usual, typical treatment to my needs. One auto and one allo later, I have been in remission for 14 months now and haven't felt better these past three years. None of us truly knows where we'll be five years (? or one year!?) from now, but we all have HOPE, and that says a LOT. I believe that a positive attitude and HOPE play a mighty role in our outcome, and whether it takes a Barlogie or a Berenson to instill this attitude is not as important as our response to the therapy or our mindset. There are many valid treatment options, and we need to respect the choices of each individual. We are not hematologists who can treat via our limited experience, nor should we simply trust the opinion of a single oncologist. What is needed is HUMILITY and GRACE. I am humbled each time I read your posts and realize how informed you are. I receive grace each time I am uplifted by your encouragement and positive attitude. Thank you for sharing your gifts, and please don't let up! And for those who play "devil's advocate", we need you, too! You keep us on our toes, you challenge our convictions, and you help us to think "outside the box"! In sum, you all create the perfect mindset for kicking this cancer! Blessings, Dana
I am so grateful for your research, wisdom, and encouragement. When I was first diagnosed, I was so stunned and so ill that I just left myself in the hands of God. Thank Heaven (literally!) that He steered me in the right direction, and that I was delivered into the hands of a specialist who broke protocol and tailored her usual, typical treatment to my needs. One auto and one allo later, I have been in remission for 14 months now and haven't felt better these past three years. None of us truly knows where we'll be five years (? or one year!?) from now, but we all have HOPE, and that says a LOT. I believe that a positive attitude and HOPE play a mighty role in our outcome, and whether it takes a Barlogie or a Berenson to instill this attitude is not as important as our response to the therapy or our mindset. There are many valid treatment options, and we need to respect the choices of each individual. We are not hematologists who can treat via our limited experience, nor should we simply trust the opinion of a single oncologist. What is needed is HUMILITY and GRACE. I am humbled each time I read your posts and realize how informed you are. I receive grace each time I am uplifted by your encouragement and positive attitude. Thank you for sharing your gifts, and please don't let up! And for those who play "devil's advocate", we need you, too! You keep us on our toes, you challenge our convictions, and you help us to think "outside the box"! In sum, you all create the perfect mindset for kicking this cancer! Blessings, Dana
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Dana - Name: Dana
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Report on Myeloma Trials at UAMS
Thanks Dana for your kind words! You have 'amazing Grace'! Glad you are doing well now...what a relief that is to reach that point. I just think that the whole multiple myeloma experience leaves a big impression on one, so if one can help in any way for others who are going through a similar 'journey', that is a form of 'giving back'. That's what people in my community say, and I get a lot of encouragement from them to write columns, which I hope are worthwhile to read!
But anyways, i don't think that my knowledge of myeloma is anything exceptional. I just started reading all the pamphlets (IMF/MC) available and any other literature. Gradually I worked my way up to understanding some of the research papers presented here, mostly. So anyone can do this...it's a reading program of sorts. After awhile, you begin to see the different issues and trends being studied. BTW, I like to read everyone's posts, since I think that no one would post here unless they had something that they felt was important to say! And there are such brilliant people posting here too. I just hope that we can stay within the usual bounds of a debate!
Right now, having just attended a really excellent patient conference, I would like to say that if there are 'information days' available from your cancer centres, it is nice to attend them. You can meet other patients, caregivers, and medical professionals that way too!
But anyways, i don't think that my knowledge of myeloma is anything exceptional. I just started reading all the pamphlets (IMF/MC) available and any other literature. Gradually I worked my way up to understanding some of the research papers presented here, mostly. So anyone can do this...it's a reading program of sorts. After awhile, you begin to see the different issues and trends being studied. BTW, I like to read everyone's posts, since I think that no one would post here unless they had something that they felt was important to say! And there are such brilliant people posting here too. I just hope that we can stay within the usual bounds of a debate!
Right now, having just attended a really excellent patient conference, I would like to say that if there are 'information days' available from your cancer centres, it is nice to attend them. You can meet other patients, caregivers, and medical professionals that way too!
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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
The Myeloma Beacon received a letter this afternoon from the law firm of Williams & Anderson of Little Rock, Arkansas.
The letter explained that Williams & Anderson is representing Dr. Bart Barlogie, Director of the Myeloma Institute for Research and Therapy (MIRT) at the University of Arkansas for Medical Sciences (UAMS).
The letter further noted that The Beacon's Terms of Service does not permit the posting of content that is "defamatory," and Williams & Anderson consider the original text of this forum posting,
https://myelomabeacon.org/forum/report-on-myeloma-trials-at-uams-t1350.html#p6872
to have contained statements about Dr. Barlogie that were defamatory.
Finally, the letter requested that The Beacon remove the posting in its entirety, and that the user who made the original posting be banned "immediately and permanently" from the forum.
The Beacon regrets that it had to learn about Dr. Barlogie's concerns through his legal counsel. Members of the Beacon Staff have regular contact with senior members of the MIRT staff, and any of those individuals -- including Dr. Barlogie -- could have contacted the Beacon staff directly to voice their concerns in a more constructive, less threatening, way.
That having been said, it is also true that The Beacon sympathizes with the concerns Dr. Barlogie's legal counsel has raised about the posting in question.
For this reason, The Beacon has edited the posting to remove statements which could be interpreted as defamatory. The Beacon also has edited a follow-up posting that contained (or referenced) text from the posting referenced in the letter from Dr. Barlogie's lawyer.
Lastly, The Beacon has contacted the user who made the original posting to warn them that any additional postings containing defamatory content will result in the postings being removed and the user being banned from the forum.
We are informing the Beacon community of the details of this development for several reasons.
First, we want to be transparent about concerns that have been raised about the discussion that has been ongoing here and how The Beacon has addressed those concerns.
Second, we want to urge the Beacon community to continue the discussion in this thread, because we believe the discussion is a very important one.
We do ask, however, that the discussion be conducted in a civil manner which does not unfairly demonize or impugn the integrity of any individual or institution.
We hope our actions in this matter reflect positively on the Beacon's fundamental commitment to providing fair and objective information important to the myeloma community.
If, however, there are any concerns about the Beacon's actions in this matter, please let us know by either voicing your opinion here, or by contacting us via email at info [{at]} myelomabeacon {[dot]} com.
Thank you!
Boris Simkovich
Publisher, The Myeloma Beacon
The letter explained that Williams & Anderson is representing Dr. Bart Barlogie, Director of the Myeloma Institute for Research and Therapy (MIRT) at the University of Arkansas for Medical Sciences (UAMS).
The letter further noted that The Beacon's Terms of Service does not permit the posting of content that is "defamatory," and Williams & Anderson consider the original text of this forum posting,
https://myelomabeacon.org/forum/report-on-myeloma-trials-at-uams-t1350.html#p6872
to have contained statements about Dr. Barlogie that were defamatory.
Finally, the letter requested that The Beacon remove the posting in its entirety, and that the user who made the original posting be banned "immediately and permanently" from the forum.
The Beacon regrets that it had to learn about Dr. Barlogie's concerns through his legal counsel. Members of the Beacon Staff have regular contact with senior members of the MIRT staff, and any of those individuals -- including Dr. Barlogie -- could have contacted the Beacon staff directly to voice their concerns in a more constructive, less threatening, way.
That having been said, it is also true that The Beacon sympathizes with the concerns Dr. Barlogie's legal counsel has raised about the posting in question.
For this reason, The Beacon has edited the posting to remove statements which could be interpreted as defamatory. The Beacon also has edited a follow-up posting that contained (or referenced) text from the posting referenced in the letter from Dr. Barlogie's lawyer.
Lastly, The Beacon has contacted the user who made the original posting to warn them that any additional postings containing defamatory content will result in the postings being removed and the user being banned from the forum.
We are informing the Beacon community of the details of this development for several reasons.
First, we want to be transparent about concerns that have been raised about the discussion that has been ongoing here and how The Beacon has addressed those concerns.
Second, we want to urge the Beacon community to continue the discussion in this thread, because we believe the discussion is a very important one.
We do ask, however, that the discussion be conducted in a civil manner which does not unfairly demonize or impugn the integrity of any individual or institution.
We hope our actions in this matter reflect positively on the Beacon's fundamental commitment to providing fair and objective information important to the myeloma community.
If, however, there are any concerns about the Beacon's actions in this matter, please let us know by either voicing your opinion here, or by contacting us via email at info [{at]} myelomabeacon {[dot]} com.
Thank you!
Boris Simkovich
Publisher, The Myeloma Beacon
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Boris Simkovich - Name: Boris Simkovich
Founder
The Myeloma Beacon
Re: Report on Myeloma Trials at UAMS
Beacon Staff,
Thanks for informing us of this. I had no idea this thread would ever garner so much attention! I thought it generated a lot of great discussion. Hopefully MIRT will respond to Dr. Mehta's letter that Blood published. That will be a lot more helpful to the myeloma patient community than having a law firm contact the Beacon. You guys are awesome!
Mark
Thanks for informing us of this. I had no idea this thread would ever garner so much attention! I thought it generated a lot of great discussion. Hopefully MIRT will respond to Dr. Mehta's letter that Blood published. That will be a lot more helpful to the myeloma patient community than having a law firm contact the Beacon. You guys are awesome!
Mark
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Mark
Re: Report on Myeloma Trials at UAMS
Hi Nick,
I was happy to read of your recent test results. Hopefully they continue.
I do not believe that you properly represented Dr. Rajkumars views on the curability of myeloma. In the much discussed "Cure vs Control" debate paper he published, this is what he wrote:
"Third, in most cases, it is probably impossible (with the possible exception of allogeneic transplantation where true complete eradication is possible for a minority of patients), unnecessary, and prohibitively toxic to attempt to eradicate all clonal plasma cells."
"Fourth, the tests used to define CR in multiple myeloma are still inadequate and often vary considerably between laboratories. Although CR defined using molecular methods with patient-specific primers after allogeneic transplantation is more prolonged,39 it cannot predict cure with certainty."
"In clinical practice, we prefer the control approach for most patients, acknowledging that high-risk subgroups need a more aggressive approach targeting CR or cure. For example, younger patients may opt for early intensive strategies, such as allogeneic transplantation, accepting high treatment-related mortality in exchange for a chance at long-term survival."
http://bloodjournal.hematologylibrary.org/content/118/12/3205.long
Just because a Doctor does not think "total therapy" is a cure, it does not mean that the Doctor does not think myeloma is a curable disease. I did a myeloablative allo 8 months after diagnosis, while I was in my first CR. I know that type of aggressive therapy is not often offered, but there are some that do it. You mentioned the panel discussion discussion that you were part of. Dr. Vij stated he offered allos to younger patients. I believe most Doctors agree myeloma is curable in the context of allo transplantation.
Mark
I was happy to read of your recent test results. Hopefully they continue.
I do not believe that you properly represented Dr. Rajkumars views on the curability of myeloma. In the much discussed "Cure vs Control" debate paper he published, this is what he wrote:
"Third, in most cases, it is probably impossible (with the possible exception of allogeneic transplantation where true complete eradication is possible for a minority of patients), unnecessary, and prohibitively toxic to attempt to eradicate all clonal plasma cells."
"Fourth, the tests used to define CR in multiple myeloma are still inadequate and often vary considerably between laboratories. Although CR defined using molecular methods with patient-specific primers after allogeneic transplantation is more prolonged,39 it cannot predict cure with certainty."
"In clinical practice, we prefer the control approach for most patients, acknowledging that high-risk subgroups need a more aggressive approach targeting CR or cure. For example, younger patients may opt for early intensive strategies, such as allogeneic transplantation, accepting high treatment-related mortality in exchange for a chance at long-term survival."
http://bloodjournal.hematologylibrary.org/content/118/12/3205.long
Just because a Doctor does not think "total therapy" is a cure, it does not mean that the Doctor does not think myeloma is a curable disease. I did a myeloablative allo 8 months after diagnosis, while I was in my first CR. I know that type of aggressive therapy is not often offered, but there are some that do it. You mentioned the panel discussion discussion that you were part of. Dr. Vij stated he offered allos to younger patients. I believe most Doctors agree myeloma is curable in the context of allo transplantation.
Mark
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Mark
Re: Report on Myeloma Trials at UAMS
Several of my readers gave me a heads-up about the "emotionally charged debate" going on here. I just finished reading three pages of impressive debate. If only our presidential candidates were this prepared!
Reading this, I feel like I'm in a time warp! UAMS/MIRT has been a lightning-rod for controversy since before I was diagnosed in 2007. As a Mayo Clinic patient, I remember involving myself in many of the same discussions with Nick and other fiercely loyal defenders of UAMS and Dr. Barlogie. Like politics, sometimes it's best to simply agree to disagree!
Do I think Dr. Barlogie and his staff tend to get carried away in their quest to find a cure for multiple myeloma? Yes. Do I believe they sometimes over medicate patients? Maybe. That's open to debate. But are they dedicated to their craft? Have they worked tirelessly to try and help their patients? And are they pioneers and leaders in the myeloma research community? YES, YES and YES!
My advice? UAMS critics should lighten-up and concede that Dr. Barlogie and UAMS have done some pretty impressive work--even if you don't always agree with their methods. And both sides should try and remember that we are all in this together! No one wants to hear that they are wrong and you are right--especially when it involves life and death decisions that we have all had to make.
Reading this, I feel like I'm in a time warp! UAMS/MIRT has been a lightning-rod for controversy since before I was diagnosed in 2007. As a Mayo Clinic patient, I remember involving myself in many of the same discussions with Nick and other fiercely loyal defenders of UAMS and Dr. Barlogie. Like politics, sometimes it's best to simply agree to disagree!
Do I think Dr. Barlogie and his staff tend to get carried away in their quest to find a cure for multiple myeloma? Yes. Do I believe they sometimes over medicate patients? Maybe. That's open to debate. But are they dedicated to their craft? Have they worked tirelessly to try and help their patients? And are they pioneers and leaders in the myeloma research community? YES, YES and YES!
My advice? UAMS critics should lighten-up and concede that Dr. Barlogie and UAMS have done some pretty impressive work--even if you don't always agree with their methods. And both sides should try and remember that we are all in this together! No one wants to hear that they are wrong and you are right--especially when it involves life and death decisions that we have all had to make.
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Pat Killingsworth - Name: Pat Killingsworth
- Who do you know with myeloma?: I am a multiple myeloma patient
- When were you/they diagnosed?: April, 2007
- Age at diagnosis: 51
Re: Report on Myeloma Trials at UAMS
I am sure UAMS is smiling all the way to the bank. If all patients spent this much money on treatment, the healthcare system would be broke even sooner. The tests UAMS runs alone is a money pit. That alone is a moral issue for me. When there are many treatments out there for far less money and just as good as results, it is an easy choice for me. I want there to be some money left in the system for my children. At the same time, I will benefit from his work, there is no way I want the side affects of his high dose program. That will help my decisions down the road.
Nick, it is kinda of scary that you think Bart was a first with Velcade. I was treated a year before you and was just on Velcade dex for nine months as my first treatment plan. Then did auto. Then did nothing for over four years...still CR. Quality of life is exceptional. Not an exception, quite common these days.
Nick, it is kinda of scary that you think Bart was a first with Velcade. I was treated a year before you and was just on Velcade dex for nine months as my first treatment plan. Then did auto. Then did nothing for over four years...still CR. Quality of life is exceptional. Not an exception, quite common these days.
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jjc
Re: Report on Myeloma Trials at UAMS
The best care of patients has been and always will be the primary mission of the Myeloma Institute for Research and Therapy (MIRT) at the University of Arkansas for Medical Sciences (UAMS). For more than 20 years we have focused our entire effort on improving the outlook for patients with multiple myeloma and related diseases. By posting to this site, we wish to assure patients and their families that we are totally committed to careful analysis of outcome data, with the ultimate goals of ensuring patient safety and fostering optimal care outcomes.
Bart Barlogie, MD, PhD
Director, Myeloma Institute for Research and Therapy
University of Arkansas for Medical Sciences
John Crowley, PhD
President and Chief Executive Officer
Cancer Research and Biostatistics
Bart Barlogie, MD, PhD
Director, Myeloma Institute for Research and Therapy
University of Arkansas for Medical Sciences
John Crowley, PhD
President and Chief Executive Officer
Cancer Research and Biostatistics
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Myeloma Beacon Blog Response 100512.docx- (95.59 KiB) Downloaded 199 times
Re: Report on Myeloma Trials at UAMS
Thanks Dr. Barlogie, for posting in! I respect all of the oncologists and myeloma specialists who work with us patients on our disease. Due to all the research and advances made in the last 20 years, we have better outcomes than previously. I know that you have been in this field all along, and are a pioneer in it. Some of your patients are also posting on this site, and speak very highly of your clinic. Happy Thanksgiving from Canada! my family has much to be thankful this year, not the least of which is good health!
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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
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