To quote Priya Menon of Cure Talk "Dr. Berenson's broadcast was WONDERFUL!"  Pat Killingsworth (author, MM advocate, and panel member) said, "Very impressive! Not often real news breaks during these things. EXCELLENT!"  I could not agree more.   You can listen to this can't miss broadcast by just clicking on the link:http://trialx.com/curetalk/2012/11/let-people-live-their-lives-listen-to-dr-berenson-on-myeloma-treatment-without-transplant-cure-panel-talk-show-broadcast/
This broadcast has a wealth of information, and I had planned on blogging about it in more detail, however Pat Killingworth has sent me a link to his blog that provides a very nicely written summary of the broadcast.  To view this summary clink on the link: Pats Blog  
Two other summaries by the Cure Talk staff are available if you clink on: CureTalk1 orCureTalk2.

Priya Menon had also written the attached about this broadcast. 


"Let People Live Their Lives!" Listen to Dr. Berenson on Myeloma Treatment without Transplant - Cure Panel Talk Show Broadcast

Broadcast of The Cure Panel Talk Show with Dr. James Berenson

CureTalk thanks Dr. James Berenson, Gary Petersen, Jack Aiello, Pat Killingsworth, and Matt Goldman for a very engaging and informative web panel discussion on multiple myeloma treatment. We had a full house listening to Dr. Berenson talk about his IMBCR ‘no transplant’ treatment and the panelists extracting as much information and knowledge from Dr. Berenson. Dr. Berenson patiently explained and answered all questions posed to him by panelists as well as the callers.

The mission of  www.myelomasurvival.com is to provide the myeloma patient community with survival rate and life expectancy data by specialist and hospital.   The belief being this will provide  patients to find the best possible information for them to make informed data driven care decisions.   We have historically not listed doctors who have not submitted or published there data.  Some well respected myeloma speicallists  have said, " instuitutional rules prohibit them from participating" , or  that they do not collect survival data or it will take some time to provide it in the format you have requested.   Some doctors also may choose not to participate, but are still considered by many to be exceptional Multiple Myeloma professionals.  So some doctors like Dr. Brian Durie, Dr. Ravi Vij, Dr. Anderson, Dr. Orlowski, and many more would never be listed on this site or listed much latter when their data becomes available.  Because this may then limit the choices provided by this site, we have decided  for the sake of the multiple myeloma patient community to provide this new list  for all of the doctors www.myelomasurvival.com considers to be multiple myeloma speciallists. 

By no means is this a totally complete or inclusive list, but reflects only our best efforts to provide a more complete list of potentially skilled Multiple Myeloma doctors.  We have vetted the list as best we can with the limited resources available, however as always you are your own best advocate and therefore should do your own research and make your own best treatment decisions.  Doctors who have submitted data or have published their data are highlighted in black, and are also listed on the home page of www.myelomasurvival.com with their survival rate statistics.    I believe those doctors that have provided data and use this data to help to improve their results though continuous improvements in their programs would be my first choice, because I always make my decisions guided by data and results(The Consumer Reports Approach).  Just click on the home button at the top of the page to view their data.  All of these doctors have adequately met the criteria that I outlined on the home page and in my blog post at the following link: http://www.myelomasurvival.com/3/post/2012/04/how-do-you-define-a-multiple-myeloma-specialist.html. This  listing is in alphabetic order.  Just click on this GO TO LIST

May God Bless your myeloma journey /Gary Petersen/[email protected]

Dr. Jan S. Moreb has recently submitted his survival statistics to www.myelomasurvival.com.  I would like to take this opportunity to welcome him as another exceptional addition to our listing of myeloma specialists.  Dr. Moreb was recommended to me by one of his patients, my friend, and the co chair of the North Florida Multiple Myeloma Support Group, Hunter Chiles.

For transplant patients under the care of Dr. Moreb, you are 3.6 times more likely to survive 2 years and 1.7 times more likely to survive 4 years, as compared to the average SEER facility.  They have provided their transplant experience and report a 2 year survival rate of 90%* versus the SEER data of  64.1%, and a 4 year survival rate of 70%* versus the SEER survival rate of 49.2%.  The data presented by Dr. Moreb is from first transplant and as a result will be understated by 3 to 5 percent from where they would be if they provided data from the time of diagnosis.  Dr. Moreb's survival is therefore slightly better than is represented here.  Receiving care through Dr. Moreb at Shands at the University of Florida provides another excellent facility for patients in the Southern Region. 

Jan S. Moreb MD, Short Biosketch:  

Professor Bone Marrow Transplant Program, University of Florida, Department of Medicine. 

Dr Moreb is a physician scientist who maintains basic and clinical research expertise. He is board certified in Internal Medicine and Hematology.  He is well published with a focus on multiple myeloma and stem cell transplantation. He is a member of many medical societies including the American Society of Hematology, the American Association for Cancer Research, and the American Society for Blood and Marrow Transplantation.  

Training:

MD - Hebrew University Hadassah Medical School, Jerusalem, Israel

Internship - Hadassah University Hospital, Jerusalem, Israel

Hematology Residency - Hadassah University Hospital, Jerusalem, Israel   

Resident and Chief Resident(Internal Medicine) - Shaare-Zedek University Hospital, Jerusalem, Israel

Oncology Hematology Fellowship -  University of Florida, College of Medicine, Gainesville, Florida


Academic Interests:

His areas of specialization in the laboratory research are in drug resistance, gene expression, and cell biology. His research interests and activities have involved laboratory research focused on aldehyde dehydrogenases (ALDH) isozymes and their role in drug resistance of hematopoietic stem cells (HSC) as well as cancer cells and more recently as a possible marker for lung cancer stem cell.

In addition, he is active in different clinical research projects. These involve different aspects of stem cell transplantation (SCT) including stem cell mobilization, engraftment, and the use of new methods to improve outcomes after autologous SCT (ASCT) for myeloma. Tandem transplants, post-transplant maintenance therapy, including adoptive immunotherapy and Phase I-III for Multiple Myeloma are his current areas of interest.

Clinical Interests:

Dr Moreb has focused his efforts on taking care of patients with multiple myeloma in addition to other hematologic malignancies. He has gained the respect of his peers from around the country and the reputation as one of the experts on multiple myeloma and other related monoclonal gammopathies.  

Dr. Berenson will be the featured Myeloma Cure Talk Panel member on this November 29th, 2012 @ 6:00 PM EST broadcast.  You can sign up for the broadcast at the following link: http://trialx.com/curetalk/panels/myeloma-cure-panel-with-dr-james-berenson-on-29-november-2012-6pm-est/

The discussion will cover Dr. Berenson's multiple myeloma treatment philosophy and preferred treatment protocols.  He has been known for protocols that do not include stem cell transplantation.

I am honored to co host this panel discussion and to have such a skilled multiple myeloma specialist as the featured Panel member for this Myeloma Cure Panel Broadcast.  Dr. Berenson's Non TransplantMyeloma treatment program at the IMBCR(Institute for Myeloma & Bone Cancer Research) is located in West Hollywood, California and has shown excellent results over time.  His 5 year multiple myeloma survival rate is the best yet recorded on www.myelomasurvival.com.   In addition, his survival rate for 16 years is projected to approach 40%, whereas the average American at age 70(the average age of a myeloma patient) has a 16 year survival rate of 50%. What this means is than some 16 years ago, without the benefit of the new novel drugs (Velcade, Revlimid, and Thalidomide), Dr. Berenson has provided a life expectancy close to that of the Average American.  That certainly begs the question, "What will be his results 16 years from now with the availability of the new novel drugs?"  Does this mean his patients may outlive the average American one day?   A discussion of these results can be found at the link:  http://www.myelomasurvival.com/3/post/2012/09/dr-berenson-has-the-best-5-year-myeloma-survival-rate-on-wwwmyelomasurvivalcom-but-theres-more.html

There is a continuum of treatment protocols from the very aggressive Total Therapy  "More is Cure" approach of Dr. Barlogie(UAMS), and Dr. Tricot(U of Iowa) to the sequential minimalist "Less is Best" or "Quality of Life"  approach of Dr. Berenson, and Dr. Asher Chanan-Kahn(Mayo-Jacksonville).   In the middle of this continuum are the majority of the myeloma treatment programs which include the excellent programs of Dr. Hari (Medical College of Wisconsin), and Dr. Rajkumar(Mayo).

A bio for Dr. Berenson can be seen at the following link:  http://www.berensononcology.com/

I think this is a can't miss opportunity to interact with one of the worlds best multiple myeloma specialists. Please sign up for this interactive broadcast, where you will be able to ask questions of Dr. Berenson, or any of the panel members.  

Best Regards and may God Bless your Myeloma Journey/ Gary Petersen [email protected]

The Cure Panel broadcast to discuss multiple myeloma cure vs. control which was co-hosted by Pat Killingsworth was conducted on October 29, 2012.  You can listen to the program at the attached link: http://trialx.com/curetalk/2012/11/listen-here-to-the-myeloma-cure-panel-discussion-with-pat-killingsworth-on-myeloma-cure-versus-control/http

Pat did a great job of pulling out some excellent information from this impressive group of myeloma bloggers, authors, and advocates.  All of the panelist are in Complete Remission or Complete Response and have been able to beat the current projections for average Life Expectancy and Survival Rate with Jack Aiello being a 17 year survivor. Some of the major takeaways that were noted by the panel members were as follows:

Jack Aiello's Takeaways:

- Actually Gary, I’m not sure we (at least me) all agree with the headline phrase “Yes, myeloma can be cured...”.  It strongly suggest that an MM patient has the option to cure or control their MM and that’s just not true IMHO. What a patient can choose to do is treat their MM either more or less aggressively. 

-The four panelists are experienced Myeloma patients sharing our knowledge, views and opinions but none of us are medically trained Myeloma experts. While myeloma treatments continue to expand and evolve, it’s still an open-ended question of which treatment is best for which patient, both in terms of response rates and side effects.  

-The best advice we can offer is for patients to get an expert MM hematologist-oncologist as part of their team, either as their primary doctor or via second opinions.

-Patients (and the caregiver) are their own best advocate and it’s important to get educated about their Myeloma via various ways such as listening to these types of discussions, asking their doctors questions, taking advantage of the many excellent webinars & seminars, and sharing experiences via support groups both in person and on-line.

Gary Petersen's Takeaways:

- There is cure, however it is a result of either allo or auto transplants with long term maintenance, and there is control as well, and it is really the choice of an educated well informed multiple myeloma patient. But you must have a myeloma specialist on your team!  Jack's first point is well taken, in that high risk patients and highly pretreated patients who are now refractory have a very low probability of  either having a curable or controllable disease.  This subset of patients is the next hurdle in multiple myeloma care and treatment.  

-The general trend in treatment seems to be going in the direction of more aggressive treatment with new drug combinations like VRD induction, transplant, and longer term maintenance therapy.  The difference between the standard treatment protocol and that of Total Therapy seem to be moving closer and closer together. 
 
-Older patients may choose the control route, if they believe they will outlive the average life expectancy for someone their age.
The younger healthy patient may choose to go aggressive with a Total Therapy type program, because 10  to 15 years of additional life is not enough for a 30 year old.

-The allo was thought to be too dangerous with a 30 to 50% TRM(treatment related mortality) and as a result only used as a last resort.  The exception would be a sibling exact match which has a 5% TRM, and has been known to be curative.  
All of the panel members had a multiple myeloma specialist as part of their team and would recommend that all myeloma patients have one on their team as well.  

Nick Van Dyk's Takeaways:

- Given that there isn't a consensus about how to treat the disease, patients must unfortunately educate themselves about their options -- the patient must be his/her own advocate, beginning with learning about the disease and different treatment choices.

- It's critical to get a Myeloma specialist -- of which there are 50-100 in the country at most.  A run-of-the-mill hem/onc will not provide the same knowledge base to help patients make decisions

- While the data is not yet universally accepted, UAMS does make a case that its Total Therapy cures over 50% of newly-diagnosed patients

- This approach is not without risks, both from short-term TMT and long-term IMID (e.g., Revlimid) use

Priya Menon's Takeaways:

-Having read about myeloma treatments, heard about all your myeloma experiences on Cure vs Control panel and Dr. Hari's panel, in my opinion, a myeloma specialist can do wonders to your case. If I am right, Gary, you have time and again made this point.

-A myeloma specialist and a myeloma specialist treatment center would certainly open up access to latest treatment ideas, clinical trials, and the best in the field. 

-The discussion was really good and informative. Especially for someone like me, who continues to  learn about various aspects of myeloma.

Pat Killingsworth's Takeaways:

Pat has provided his take on the broadcast at his recent blog post on the Myeloma Beacon.  He indicates that in mid discussion  he was moving towards the cure approach, however he thought that by the end of the discussion he was back to control.  He felt the new drugs and treatments may make control the correct course to follow.  He feels that cure will be achieved in this time-frame.  You can read his entire Beacon article at:  http://www.myelomabeacon.com/headline/2012/11/01/pats-place-how-many-ways-are-there-to-remove-a-band-aid/  

Please take the time to listen to this very valuable discussion. What is obvious is that all of the panelists have become their own best advocates, have become educated in myeloma treatment options, and made sure they have the best possible myeloma specialist on their team.  And one that matches their educated treatment choices.  


God Bless each of your who are on this myeloma journey/ Gary Petersen [email protected]