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Multiple Myeloma SPECIALIST List RESOURCES, Why is it Important to see a Specialist By: Dana Holmes

9/27/2019

I can offer my opinion from a Smoldering Myeloma patient's perspective as it relates to a Multiple Myeloma Specialist and what/why we recommend in our Smoldering Myeloma Support Group. There are "tiers" of specialists.

An MM specialist is a hematologist and likely also an oncologist who ONLY treats patients with MM. They DO NOT treat any other blood cancers/disorders (Leukemia/Lymphoma) or solid tumor cancers. The top tiered MM specialists are the ones who are conducting and publishing the research and are the Principal Investigators of the clinical trials offered to the MM community.

They are also the doctors who are presenting this data/research at their "industry" seminars and conferences, such as ASH (American Society of Hematology) and ASCO (American Society of Clinical Oncology), European Hematology Association (EHA) etc. Most are associated with large academic/university centers and cancer centers. Many are the Directors or Chiefs of their Departments and are members of the International Myeloma Working Group. IMWG members are the “governing” body of the International Myeloma Foundation. They are a group of over 200 top MM specialists from around the world...they convene annually to develop consensus guidelines which are disseminated to local hematology practices.

A general hematologist will treat ALL BLOOD disorders, including MM. A general oncologist will treat all cancers. Some of these doctors can be both hematologists and oncologists as well.

The overall outcomes for patients who are under the care of MM specialists are greater than for those who remain under the care of local community hematologists and oncologists. We highly recommend seeking at least a consult with an MM specialist and finding a local hematologist and/or oncologist who would be willing to partner with them to cover/monitor your care should you not be able to continue under the direct care of the MM specialist.

A recent study by the Mayo Clinic supported specialized care is the way to go. Read about this study in the Myeloma Crowd http://www.myelomacrowd.org/how-to-live-longer-with-multiple-myeloma/ as well as the formal study published in The Journal of Clinical Oncology: Association Between Treatment Facility Volume and Mortality of Patients With Multiple Myeloma http://ascopubs.org/doi/full/10.1200/JCO.2016.68.3805

If you want to determine if your particular doctor is conducting/publishing research, use this link. https://www.ncbi.nlm.nih.gov/pubmed/?term=Angela+Dispenzieri

Enter your doctors name along with "and Myeloma" in the search tool bar. This will bring up any research he/she has published and which has been peer reviewed.

This will work for any disease. If you want to check your physician's research interest for MM or SMM (as an example) just link his/her name with that disease. You can try to use the term "and MGUS", but you likely will not find much, as MGUS is part of a disease spectrum. Searching by the highest degree of a disease spectrum will likely yield search results.

If you don't see anything listed, it is likely he/she is not actively engaged in research for this particular disease.

Do a second search and just enter the physican's name. His/her research will be listed, and it will provide insight into their clinical interests.

Does this mean he/she is not a "good/great" doctor? No it does not mean that at all, but it infers your disease is not their primary focus. If they are not the researchers, at the very least, you want someone who attends their "industry" seminars and conferences to insure he/she is up to date on all of the emerging information. How do determine this? You ask them. Ask them what conferences they attend? You have every right to be an informed "consumer" of your healthcare. We all deserve the very best care. Many of us travel to get this level of care, as these types of top specialists are not found in great numbers.

Again, this is my opinion (but it is also opinion of many in the myeloma patient community).

MANY OF OUR GROUP MEMBERS HAVE LISTED THEIR MM SPECIALISTS IN THE COMMENT SECTION OF THE GROUP MEDICAL DISCLAIMER DOCUMENT ...click on this link to review those comments https://www.facebook.com/notes/smoldering-multiple-myeloma-aka-smm/medical-disclaimer-for-smoldering-multiple-myeloma-aka-smm-facebook-group-est-12/1430234153886158

Our Member's Multiple Myeloma Specialists Listing
https://www.facebook.com/notes/140081448349479/Our%20Member's%20Multiple%20Myeloma%20Specialists./1784708618438708/

Why Should Myeloma Patients Visit a Specialty Center? - See more at: http://www.patientpower.info/video/why-should-myeloma-patients-visit-a-specialty-center#sthash.JgqNvYbc.dpuf

Multiple Myeloma Specialists and Hospitals or Treatment Centers ** http://myelomasurvival.com/myeloma-specialists-listing.html

** Please note.. Both of the lists provided in this link from Gary Petersen may contain the name of the Director or Chief of the Myeloma Specialty group only...it may not capture all of the specialists within that group...if you don't find the name of "your" specialist on either of these lists, just try to determine if his/her Director or Chief is listed...this will assure you they are Myeloma/MGUS specialists and associated with the Director or Chief who is listed.

Multiple Myeloma 2017 Update - Why Do People Beat the Average Myeloma Life Expectancy Prognosis? Or How To Improve Your Multiple Myeloma Survival Rate!
http://myelomasurvival.com/myeloma-blog/multiple-myeloma-2017-update-why-do-people-beat-the-average-myeloma-life-expectancy-prognosis-or-how-to-improve-your-multiple-myeloma-survival-rate

Listen to the Myeloma Crowd radio interviews with many of the top myeloma specialists in the world (they provide transcripts if you prefer to read) >>> http://www.myelomacrowd.org/myeloma-crowd-radio/

Multiple Myeloma Research Foundation (MMRF) / Multiple Myeloma Research Consortium Member Institutions
http://themmrc.org/about/member-institutions/

Multiple Myeloma Research Foundation (MMRF) list of Myeloma specialists by state http://www.themmrf.org/living-with-multiple-myeloma/find-a-treatment-center/

The International Myeloma Foundation (IMF) / International Myeloma Working Group (IMWG) Members (Please note, although most members listed are hematologist/oncologists, some may be Radiologists or Metabolic Bone Disorder Specialists, as an example. Best to search their names to find their specialty ) (Also, please note, the IMF has not updated this list, some of these specialists have transferred to other Myeloma centers). http://imwg.myeloma.org/imwg-members/

A video from Dr. Brian Durie, Chairman of the International Myeloma Foundation (IMF) with advice how to locate a Myeloma specialist. https://www.youtube.com/watch?time_continue=12&v=weBGoq7YkYQ

Here is another resource to locate MM specialists (it has some outdated info it seems, doesn't seem to have captured some moves/relocations, so be sure to double check the names you may find and want to consult with against some of the other lists or just by googling the specialists name to see where they are practicing now.) http://www.expertscape.com/ex/multiple+myeloma

Who's Who @ the Mayo Clinic : List of MM Specialists http://msmart.org/

Here is a excerpt from a Myeloma Beacon Discussion (April 3, 2014) http://www.myelomabeacon.com/forum/centers-of-excellence-t3088-10.html and a link to Bone Marrow/Stem Cell Transplant Centers in the U.S.

Re: Multiple myeloma centers of excellence by

Dr. Edward Libby on Thu Apr 03, 2014 1:31 pm

Hello from gray (but warming up) Seattle,The following link is to US transplant centers that perform allogeneic stem cell transplants. Even though allo transplantation is not the standard transplant option for multiple myeloma I am posting this link because all allo transplant centers perform auto transplants as well. In general at these centers two out of three transplants are autologous transplants and the majority of autologous stem cell transplants are for multiple myeloma. Centers that perform both autologous and allogeneic transplant are going to be larger and busier. With a larger center that does more transplants there is generally going to be more experience andexpertise. http://bethematch.org/For-Patients-and-Families/Getting-a-transplant/Choosing-a-transplant-center/U-S--transplant-centers/

Types of Bone Marrow Transplants http://www.hopkinsmedicine.org/kimmel_cancer_center/centers/bone_marrow_transplant/types_transplants.html

Here is a good search tool to use to find the research interests of your MM specialists (type their name in the toolbar)
http://www.ncbi.nlm.nih.gov/pubmed/?term=ola+landgren

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If History Repeats Itself, The State of Myeloma New Drug Development Is STRONG! The Myeloma Miracle - Part 3

9/23/2019

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If In the last 16 years multiple myeloma has had 10 drugs approved. All of these drugs have had two things in common, they all were awarded an FDA Orphan Drug(OD) designation, and secondly they all had one of the additional FDA designations of Fast Track, Breakthrough Therapy, Accelerated Approval, or Priority ReviewL. NO new drug has ever been approved for myeloma in 16 years without at least two of these FDA drug approvals. To be an orphan drug it must first affect no more than 200,000 patients in the US. The FDA's Office of Orphan Products Development is tasked to evaluate scientific and clinical data from companies to identify which therapies can improve the lives of people suffering from rare diseases. Orphan status is given to drugs and biologics defined as "those intended for the safe and effective treatment, diagnosis or prevention of rare diseases/disorders". The other destinations are designed to speed the availability of drugs that treat serious diseases, especially when the drugs are the first available treatment or if the drug has advantages over existing treatments. The Food and Drug Administration has developed four distinct and successful approaches to making such drugs available as rapidly as possible:

Priority Review (PR)
Breakthrough Therapy (BT)
Accelerated Approval (AA)
Fast Track (FT)

A more in depth description of these additional designations and the advantages of getting them is available if you CLICK HERE.

Those drugs approved for use in mutiple myeloma in the last 16 years and the date of FDA approval for clinical use is as follows:

Velcade       2003          Pomalyst      2013           Ninlaro          2015

Revlimid    2006      Faradak       2015           Darzalex       2015

Doxil            2007            Empliciti       2015          Selinexor      2019

Kyprolis     2012

How can history repeat itself? First if we find what drugs which have at least two FDA designations but are not as yet approved by the FDA for clinical use, this just may be a very good list to see what the next FDA approvals likely will be. I count 7 drugs which have an orphan drug and one other FDA designation. For all of the drugs above which have been approved the average time from orphan drug designation to FDA clinical approval is 4 years, as compared to an average of 8 years without these two designations. A remarkable feat of twice as fast to market. Those 7 new drugs are with dual FDA designations are:

Drug                             Company                 Designations      Description

AMG420                        Amgen                        OD&FT          (BCMA) Bispecific T-Cell Engager
                                                                                                (BiTE®) Antibody Construct
CLR131                         Cellectar              OD&FT           Radiotherapeutic phospholipid drug
                                                                                                 conjugate (PDC™)
GSK2857916               GlaxoSmithKline           OD&BT          (BCMA) antibody-drug
                                                                                                 conjugate (ADC)
bb2121                          Celgene                       OD&BT          BCMA chimeric antigen receptor
                                                                                       CAR T
Galinpepimut-S              Sellas                      OD&FT          Immunotherapy vaccine to elicit a
                                                                                                 strong response against WT1
P-BCMA-101                 Poseida                     OD,FT&BT      Autologous chimeric antigen receptor
                                                                                                 (CAR) T-cell therapy
Melflufen                Oncopeptides            OD&AA         Drug activated by aminopeptidases,
                                                                                      overexpressed in myeloma

Many more drugs have an OD designation, but as yet have not received the second designation. So additional likely candidates could be added if and when they receive an additional designation by the FDA. This is remarkable when you consider the average orphan disease has less than one approved drug for each of the 6000 orphan diseases! If history repeats itself, I would argue we have a high probability of having 7 new drugs approved for the treatment of myeloma within 4 years or a rate almost 3 times that of the recent historic rate of myeloma drug development. This would be absolutely miraculous! I must thank the FDA with government support for putting in place the Orphan Drug Act, but again there is a synergistic magical sauce in the myeloma care community which has made myeloma a template for rare disease drug development. All the players in this community which includes the researchers, academics, myeloma specialists, patients, caregivers, patient advocates, large and small drug companies, supportive care teams, NCI, FDA, IMF, MMRF, LLS, Myeloma Crowd, and all those I may have left out, work in a talented cooperative team environment!

In this group of drugs are 6 new drug classes, and for each new class of drugs approved by the FDA we have had a 1 year increase in life expectancy. If history repeats itself, 6 new drugs would mean 6 more years of life expectancy for all myeloma patients or again double life expectancy, and 6 more steps towards THE CURE.

To read the prior two Myeloma Miracle posts click on PART1 or PART2. Good luck and God Bless your Cancer Journey/ [email protected] For more information on multiple myeloma CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1

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Multiple Myeloma SPECIALIST List RESOURCES, Why is it Important to see a Specialist By: Dana Holmes

If History Repeats Itself, The State of Myeloma New Drug Development Is STRONG! The Myeloma Miracle - Part 3

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