The controversial Myeloma Institute for Research Therapy (MIRT), part of the University of Arkansas Medical Sciences (UAMS) complex in Little Rock, has heated-up again. (They sure love acronyms in the medical field, don’t they? I have always preferred to use UAMS)
Several of our regular readers alerted me to a fascinating, long and winding thread that was developing on one of the Myeloma Beacon Forum sites.
You can find it by going to MyelomaBeacon.com, clicking on the “Forums” button at the top of the page and typing-in “Report on Myeloma Trials at UAMS.”
Apparently, the whole thing started when one of our most informed contributors, Mark, posted a study critical of UAMS:
An analysis of University of Arkansas Total Therapy Publications
I joined the party late. I believe my comment was 27th in line–although it sounds like the number started-out higher. Why were some comments removed? Attorneys representing UAMS and lead physician, Dr. “Bart” Barlogie, threatened legal action if some of the defamatory content wasn’t expunged.
You can’t make this stuff up!
What a perfect lead-in to the announcement that I will be hosting the next Myeloma Cure Panel discussion the evening of October 29th at 7 PM EST.
Several of my fellow myeloma bloggers, including Gary Petersen, UAMS and Total Therapy (TT) patient, Nick Van Dyk, and fellow Californian Jack Aiello will be joining me for a no-holds-barred, open and honest discussion about by far the biggest conflict/disagreement between myeloma specialists: Cure vs Control. Can multiple myeloma be cured?
I purposely chose not to invite a myeloma doc to join us on the 29th. I didn’t want political correctness to get in the way of our heartfelt patient’s perspective.
I will keep everyone updated about how this new age teleconference/online format works. Up to 50 callers can participate and ask questions of the panel. Or you will be able to email your questions in ahead of time.
Live listeners will be limited to the 50 mentioned above. But the real value is in the online recorded broadcast. Starting the next morning, you will be able to click-on a link so that you can listen to the discussion at your leisure.
CLICK HERE to view the promo poster for the event.
As a former Mayo Clinic Patient, I learned early-on to avoid discussing Total Therapy with UAMS patients and caregivers. For those of you that aren’t familiar with the politics, Mayo Clinic tends to be conservative when treating myeloma, while UAMS specialists tend to be far more aggressive. Anyway, things always seemed to get out-of-hand, resulting in pages and pages of stats and vitriol being exchanged that never seemed to really solve anything.
So I was surprised to learn that I would be moderating a panel set to discuss it all live! I wonder if there are going to be censors on hand in case the language gets a bit salty as things heat-up. It should be fun!
Feel good and keep smiling! Pat
October 5th, 2012 at 1:44 pm
I like the topic of your Cure Panel Discussion, “Cure vs Control. Can multiple myeloma be cured?” but I disagree with your format. I’d rather hear the thoughts of learned doctors and researchers than patients who take the side of which treatment path they are following and then hope for the best. Obviously if you go with the aggressive approach you are hoping for cure while the easier approach is about control. But what do a bunch of laypeople know about whether or not a type of cancer can be cured?
October 5th, 2012 at 1:49 pm
I hope I can join the conversation. It’ve tried to follow various blogs on the topic but I can never seem to find the answer to one simple (I think!) question – are there people living today who previously had MM, participated in TT (any version), no longer have myeloma and are not on maintenance therapy? Do you know that answer, Pat?
October 5th, 2012 at 2:50 pm
Joseph-
On paper, you make a great point! But I have found that physicians are reluctant to criticize each other. For example, I have had several physicians and other experts in the field speak critically of UAMS. But when the time comes for an interview, they clam-up! One even called me back and asked me to modify my interview transcript–even though he admitted he had said what he wanted removed! Conversely, I’m sure there are some choice things UAMS physicians would like to say about some two-faced competitors from other institutions. This is a different sort of format. Why not give it a try?
October 5th, 2012 at 2:55 pm
Susan-
I believe the answer is yes. But there are also rare patients who are “cured” that have undergone other therapies, too. I just met an auto SCT myeloma survivor that is still in remission 14 years after her transplant! But the honest problem with all of this is that, while 14 year remissions for a breast cancer or prostate cancer survivor statistically means that they are cured, in myeloma in means you are statistically MORE likely to relapse soon. That’s the biggest point of contention between UAMS specialists and the vast majority of other myeloma experts. I believe that Dr. Barlogie would argue that a TT patient who is three or more years out in CR after their therapy ends is cured. Others would say no–its just a matter of time until they relapse. Hard to prove unless you wait 15 or 20 years, right?
October 5th, 2012 at 4:10 pm
Joseph, I tend to agree with you. But I completely see what Pat is talking about. The way to bridge this would be for Pat to get a couple doctors to ANONYMOUSLY participate in these discussions. I could see having them sit down with stenographers while they dictate (to avoid finding out the identity of the Dr. by their voice), and having the “live” discussion but through typing. Or voice-altering done so they can speak but not have their identities discovered.
I would LOVE to hear exactly what these Dr.’s think and feel about research and each other. The hard facts and opinions that they only share with colleges would be very helpful for a lot of patients and caregivers.
But these are probably just pipe dreams. In the meantime, your panel of patients-only still can give some good information. I just am a bit wary of anecdotal evidence vs. many patients’ data that a Dr. or organization would be able to pull from that can cause a bias that would not be beneficial to patients and caregivers.
October 5th, 2012 at 4:18 pm
I understand all the points you guys are making and will still listen in but I just don’t think you can make any valid conclusions from what will be said. Probably the loudest or most articulate will do most of the talking.
Anyway, Pat, I’d love to read the comments you’ve heard about UAMS. Perhaps you could share them with us without revealing the sources.
October 5th, 2012 at 8:15 pm
Hi Joseph – If you have not seen the debate last year between Dr. Rajkumar and Dr. Barlogie on the subject of if “total therapy” is a cure, here is a link to the first part.
http://www.youtube.com/watch?v=83Af-gQCO8Q
Note that most of the discussion is about if the survival curves go flat. It is more of a statistics discussion than a scientific one. I have tried to read some of the more technical papers about how allos work and it takes a long time to understand it. If the Doctors had a scientific discussion it would go over most patients heads. It is also difficult to have a scientific debate because there is not a consensus among the Doctors on exactly what the progenitor (myeloma stem cell?) cell is. To get an idea about what that discussion might be like, here is a link to a recent research paper that Pat’s Doctor was part of.
http://www.ncbi.nlm.nih.gov/pubmed/22988056
It is revealing that they do not think Revlimid, Velcade or melphalan can kill what they are proposing the progenitor cell is, but how many patients are going to be able to follow a discussion like that?
I think having the patients do this one is a great idea. The panel is a VERY informed group. If any patient has been cured of myeloma, it is likely Jack Aiello. He had a female donor for his allo and has been in remission for something like 15 years. Male recipients of female grafts have the least chance of relapsing in myeloma and other blood cancers. I also had a female donor so I am fairly well read on that topic. I think it will be great to hear the perspective of a patient like Jack that who did tandem autos and then did an allo at relapse and is where we all want to be – no therapy required and a LONG remission.
October 5th, 2012 at 10:21 pm
Susan, yes, there are patients who have “graduated” from Total Therapy with total remission and no longer undergoing treatment. One good way to get information from a patient’s viewpoint is to call MIRT and ask to be contacted by a “Myeloma Ambassador”. These are people who have graduated and volunteer to talk with newly diagnosed MM’ers. They can answer a lot of questions and explain the process. Chuck
October 6th, 2012 at 8:16 am
Thanks, guys! I have always been fascinated by the way the myeloma community has never seemed to accept UAMS. They have always seemed like the new kid who tries so hard but never gets invited to sit at the cool kid’s table! This is odd, since UAMS has always been the biggest kid on the block.
October 6th, 2012 at 11:13 am
Now that forum will wake you up in the morning! I really learn a lot from NVD, I hope this doesn’t stop him from sharing all he has learned.
One good thing that could come of this, is patients from UMAS that have went thru TT protocol and are off maintenance and doing well would share their stories with all of us. Always good to hear success stories. I was hoping they would contribute on the forum.
October 7th, 2012 at 9:39 am
Pat I certainly look forward to this Cure Panel topic. It has been my experience that people find CHANGE uncomfortable. That when there is an accepted norm, change in itself can be threatening. There is a tendency to what to continue with the flow of the majority opinion. The Change Agent’s very mission often puts them at odds with the status quo, and as a result open for critique and criticism.
I happen to be in awe and am so thankful that these thought leading rouges exist in the medical community, without which very little new thinking or breakthrough treatments would ever be developed. Pat you certainly have kicked a hornets nest here, but it should be fun, as long as it remains a civil discourse! Best Regards/Gary Petersen
October 7th, 2012 at 12:28 pm
I’m not sure it is all as controversial as it seems, Gary. Even if one could be cured by TT, a number of patients and caregivers would still select the less invasive control route. Specialists and researchers need to establish a reliable baseline. That means UAMS work needs to be duplicated outside of the institution. That would lift the cloud of doubt and suspicion and demystify the whole thing…
October 8th, 2012 at 10:04 pm
Pat said: “That means UAMS work needs to be duplicated outside of the institution. That would lift the cloud of doubt and suspicion and demystify the whole thing…”
Yep….that’s ALL it would take…so why haven’t they? Particularly, if concern for the patient is paramount, then why wouldn’t UAMS et al facilitate peer reviewed studies with other universities?
Steve
October 9th, 2012 at 8:20 am
Some would argue that it has, Steve. But it tends to be at centers (like Huntsman in Utah) where “disciples” of Dr. Barlogie set-up-shop. For our fellow patient’s sake, I would just like to rule-out jealousy or stubborn adherence to medical standards of care as reasons why TT isn’t more universally accepted–if the numbers are as good as claimed…
October 16th, 2012 at 5:43 pm
Cure vs control? This isn’t for 100% of MM patients, or is it? I’ve always thought that low risk, early stage meet this criteria. Can high risk and late stage have a chance for a cure? Do you know anyone who 15 years out and late stage? Roy
October 17th, 2012 at 8:26 am
Hey Roy! In one way you are correct. UAMS docs are claiming that they can (or soon will be able to) cure about 20% of patients. Even all younger, low risk patients won’t quit make it. That’s what they claim. Now, will there be plenty of info there for a late stage patient? YES! And do I know late stage patients that have lived 15 years? YES! I spent last weekend with a number of them in Boston last week. And there are more and more each day…
October 17th, 2012 at 5:16 pm
Pat, wrote the following to a link on the myeloma beacon that questioned the deaths from the Total Therapy 2 program at UAMS. I was hoping it might provide some clarity.
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
October 17th, 2012 at 11:32 pm
Never looked at it that way, Gary. Actually, I don’t follow most of these stats at all. I’m more interested and focused on patient quality of life. After all, I was a history/social studies teacher/counselor. So I’m interested in things like, does TT show a superior result, considering the heavy duty meds participants are exposed to over such a long period of time. In other words, what is the opportunity cost/lost; an old econ theory. Is taking all of those meds–and discomfort associated with it–worth living an extra year? Or the outside chance this cure thing is possible? I don’t know the answer…