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Dr. Robert Orlowski - One of Myeloma Survival's GREAT EIGHT Discusses How Clinical Trials Have Changed  Myeloma Treatment at MD Anderson

3/22/2014

21 Comments

 
Dr. Orlowski was featured on the Cure Panel broadcast of March 28th.  He discussed the role of Clinical Trials in the development and improvement of treatments for multiple myeloma at MD Anderson. You can listen to a rebroadcast of the program if your CLICK HERE.  You might want to know more about Dr. Orlowski, and I have included a quick bio for Dr. Orlowski at the end of this post.  It is my belief, a select few myeloma specialists stand above the rest.  I believe Dr. Orlowski is one of them. These myeloma specialists are innovators, leaders, teachers, patient centric, dedicated, extremely skilled in myeloma treatment, driven, have well above average life expectancies and survival rates, and are just exceptional caring and kind individuals. 
Picture
 It is not  that all of the myeloma specialists do not have these characteristics, but there is a cream that rises to the surface. 
So who are the top picks of www.myelomasurvival.com.  The GREAT EIGHT  In alphabetical order, our SUPER myeloma specialists.

Dr. Barlogie - UAMS, Little Rock AR
Dr. Berenson - IMBCR - Los Angeles,CA  
Dr. Hari - Medical College of Wisconsin, Milwaukee, WI
Dr. San Miguel - University Hospital, Salamanca, Spain
Dr. Orlowski - M.D Anderson, Houston, TX
Dr. Palumbo - University of Torino, Italy
Dr. Rajkumar - Mayo, Rochester, MN
Dr. Richardson - Dana Farber Cancer Institute, Boston, MA  


Everyone will have an opinion, however, I think few can deny the quality of myeloma specialists represented on this list.  Many people will not be able to chose one of these doctors for their doctor for a number of reasons, however there is a good chance you can get a second opinion from one of them which could be the template for your local myeloma specialist to implement.   What is remarkable about this list is they each have their own treatment philosophy which goes from "Less is Best" to "More is Cure", and due to their experience and skill have provided exceptional outcomes for their patient's.

Short Bio


Robert Z. Orlowski, MD, PhD, is Director of Myeloma, and Professor of Medicine in the Departments of Lymphoma/Myeloma and Experimental Therapeutics, Division of Cancer Medicine, at The University of Texas M.D. Anderson Cancer Center in Houston, Texas. He is board-certified in internal medicine and medical oncology. Dr. Orlowski earned his doctoral degree in molecular biophysics and biochemistry from Yale University and his medical degree from the Yale University School of Medicine. He completed his internship and residency in Internal Medicine at Barnes Hospital at the Washington University in St. Louis School of Medicine. Dr. Orlowski has published numerous book chapters, articles, and abstracts on cancer therapy, with a focus on the molecular pathogenesis of oncologic disease processes and the mechanisms of action of chemotherapeutics.


21 Comments
Dana Holmes
3/22/2014 10:56:38 pm

Hey Gary,

Great blog topic. I would like to raise your Super Eight to the Mighty Nine by adding Dr. Ola Landgren who I consider to be quite an Innovator and on equal par with your Super Eight. His work in his lab validating Dr. San Miguel's MRD testing techniques has led to the IMF's Black Swan Initiative of MRD testing standardization. He established the MRD testing discordance which exists amongst the major MM institutions, recently presented @ the IMF Boca Raton Seminar. An MRD negative status proclamation by one does not meet the threshold of MRD negative status by another. This is problematic and his work has led the drive to establish MRD testing standardization. Without it, we will continue to compare apples to watermelons.

Additionally, the level of research he does with the precursor states of Smoldering MM and MGUS remains unique. He speaks of the blueprint to the cure for early myeloma. If that alone doesn't meet the criteria set forth - "myeloma specialists are innovators, leaders, teachers, patient centric, dedicated, extremely skilled in myeloma treatment, driven, have well above average life expediencies and survival rates, and are just exceptional caring and kind individuals.", then I will remain forever confused. All the very best to you. Dana

Reply
Gary Petersen link
3/22/2014 11:59:05 pm

Dana, From all I know of Dr. Landgren he is one of the best in the world. One of the measures that I used and gave a very high value was their survival statistics. I did not have Dr. Landgren's survival statistics. Only three on the list had not provided statistics, and two are from Europe. I stopped at 8 because I had to stop someplace. Started out as the FAB 5!

Best Regards/Gary

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Dana Holmes
3/23/2014 12:10:43 am

Thanks Gary,
Got it and understand the value of their survival statistics in your measure. Dr. Landgren is heading to MSKCC which have some solid survival stats, perhaps next go around you will expand to the Terrific 10 and he will formally "make" the list ! Thanks for all you do, always appreciate and value your insight.
Best to you,
Dana

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Gary Petersen link
3/23/2014 03:48:28 am

With both Dr. Landgren and Dr. Giralt at MSKCC, they will make one great dynamic duo! Dana, thank you for your kind words and support!
Best Regards/Gary

suzierose link
3/23/2014 06:56:42 am

Gary,
Did Mayo and DanaFarber provide you with survival stats?

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Gary Petersen link
3/23/2014 07:34:52 am

suierose, If you go to the home page of www.myelomasurvival.com you will see Mayo's data. I did not get info from Dana Farber, even though Dr. Richardson made a gallant effort to provide them. Their work on RVd and their leadership in research and treatment put them on the list. Dana Farber was the only US facility to get on the list without published survival data. Best Regards/Gary

Jack Aiello
3/23/2014 04:15:30 am

The best news today for MM pts is that there are so many more great MM experts than 8 or 10. Just look at the Scientific Boards for the IMF and MMRF or check out the 160 MM experts that make up the International Myeloma Working Group (IMWG).

Reply
Gary Petersen link
3/23/2014 04:34:06 am

Jack, you are so right. The IMF and MMRF have been instrumental in drawing outstanding hematologist,oncologists into specializing in myeloma research and treatment. Best Regards/Gary

Reply
suzierose link
3/23/2014 06:59:03 am

Hi Gary,

Just curious. What is in the myeloma creme to make it rise to the top?
:)

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Gary Petersen link
3/23/2014 07:42:03 am

Very interesting question. I think it will require some research, interviews, and years of study to quantify. I will put that on my TO DO list. LOL which stands for laugh out loud, see I am hip!

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priya
3/23/2014 04:19:30 pm

Wow..Gary! this is awesome! We have talked to 5 of these docs and some of them twice on CurePanel!

Reply
Gary Petersen link
3/23/2014 09:51:16 pm

Priya, that is great. The best tend to share their expertise, and provide education and outreach to the myeloma patient population.

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Dana Holmes
3/24/2014 12:56:45 am

Priya,
Do you have any links to interviews you did with Dr. Barlogie? I would love to listen !

Reply
Gary Petersen link
3/26/2014 10:15:56 pm

We do not have a Cure Panel talk with Dr. Barlogie, but we do for Dr. Van Rhee of UAMS. You can find the link at: http://www.myelomasurvival.com/1/post/2013/12/dr-fritz-van-rhee-of-uams-discusses-the-multiple-myeloma-total-therapy-program-with-a-40-cure-rate-for-low-risk-patients.html

He had an excellent debate about Cure vs, Control with Dr, Rajkumar if you go to the link: http://www.myelomabeacon.com/forum/barlogie-rajkumar-cure-vs-control-debate-t791.html

Mary T
3/24/2014 12:35:26 am

Dr. Singhal and Dr. Mehta at Northwestern in Chicago should make the list

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Gary Petersen link
3/24/2014 01:50:53 am

Dr. Singhal and Dr. Mehta are both excellent myeloma specialists. They both studied under Dr. Barlogie and Dr. Fritz Van Rhee at UAMS, and have an excellent practice at Northwestern. They were part of the first Thalamid trials at UAMS.

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Pat Killingsworth link
3/24/2014 02:51:33 am

I've been going to do this for years. I've kidded in the past that we should have "baseball cards," featuring pictures and stats about top myeloma docs! My list would be quite different than yours. Dr. Kyle at Mayo needs to be there from a historic perspective if that's one of the criteria. Hard to leave Dr. Anderson from Dana-Farber off the list. Berenson's controversial for sure. Dr. Stewart at Mayo, Scottsdale is an up and comer. So many great Mayo docs: Kumar, Dispenzieri, Gertz. My top five in no particular order: Rajkumar, Anderson, Richardson, Orlowski, Barlogie. True myeloma rock stars!

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Gary Petersen link
3/24/2014 03:12:41 am

Pat, we are not that different. I have 4 of your top 5. One of the major factors was excellent survival rate and life expectancy, and from that criterion Dr. Berenson is near the top. The other is that I chose to have just one person per institution, and I chose Richardson because he is more of the clinician at Dana Farber. Gary

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Derek
3/29/2014 01:35:43 am

My father was recently diagnosed with mm. Discovery after a kyphoplasty procedure a month ago. He lost 30 lbs in 2 weeks. Made some physical improvements unti recently digressing and losing weight again and unable to walk due to pain and and potentially other cracked vertebrae. He is a veteran whom had a craniotomy in 1986 from military. I am desperate to find someone/dr willing to help and potentially study this unique conglomerate of issues as I am getting nowhere. Medication completely disorients him. I simply need an expert and we are very open to experimental route as if something doesn't change very soon....I know he is already giving up and he sees no hope. Any ideas/thoughts/someone I can talk to?

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Gary Petersen link
3/29/2014 02:16:51 am

I will forward this to the two doctors I know who have been outstanding in talking with patient who need information and guidance. It is one of the reasons I consider them one of the great 8. If they can help they will contact you. Best Regards/Gary

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Bonnie Falbo
2/8/2016 08:06:39 pm

Hello Gary,
I'm so glad I found you and this site. My husband was just diagnosed with SM after having MGUS for 8 years. I want to make sure he is put in the correct risk group and has had all the tests available for determining risk stratification. We live in Va. but have family in NY. For an evaluation at this level I'm thinking of Dr. Lundgren, given all his research on SM. Would you concur? Anyone else you would recommend for this purpose? Also, do you know if these top docs require you to do your labs and tests all over again? Does Medicare cover that? We've already had blood, urine, MRI and bone marrow biopsy. I'm new at this so please help.
Thanks so much,
Bonnie

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