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Multiple Myeloma The Only Answer Until There Is A CURE.

12/23/2016

Multiple Myeloma SPECIALIST List RESOURCES, Why is it Important to see a Specialist
Dana Holmes·Friday, December 9, 2016

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. Most are associated with large academic centers and cancer centers. Many are the Directors or Chiefs of their Departments.

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.

If you want to determine if your particular doctor is conducting/publishing research, use this link. https://www.ncbi.nlm.nih.gov/pubmed... 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
https://www.facebook.com/notes/smol...

Our Member's Multiple Myeloma Specialists Listing https://www.facebook.com/notes/1400...

Why Should Myeloma Patients Visit a Specialty Center? - See more at: http://www.patientpower.info/video/...

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

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

Multiple Myeloma Research Foundation (MMRF) list of Myeloma specialists by state
http://www.themmrf.org/living-with-...

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://myeloma.org/IndexPage.action...

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/multi...

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

Here is a excerpt from a Myeloma Beacon Discussion (April 3, 2014) http://www.myelomabeacon.com/forum/... 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 and expertise. http://bethematch.org/For-Patients-...

Types of Bone Marrow Transplants
http://www.hopkinsmedicine.org/kimm...

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/...

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ASH 2016: A Meeting of the Minds! Myeloma Specialists Come Together in Greater Consensus.

12/22/2016

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Ten years ago, when I was diagnosed, there were few drugs available and no common understanding of what treatment was best for different patients. Revlimid and Velcade were not approved yet and every myeloma specialist (people who treated a fair number of myeloma patients) could agree on very little. One transplant vs. two, what drugs to use and in what sequence, and should one drug be used at a time or a combination?

However today I believe “We have come a long way baby!” The IMF conducted a symposium on Friday titled “TREATMENT ADVANCES IN MULTIPLE MYELOMA: EXPERT PERSPECTIVES ON TRANSLATING CLINICAL DATA TO PRACTICE.”

The expert panel included Dr. Rajkumar, and Dr. Shaji Kumar from Mayo Clinic, Dr. Philippe Moreau of France, Dr. Jesus San-Miguel (seem to be the character of the bunch), and Dr. Bruno Pavia, both of Spain. The program was moderated by the president of the IMF Dr. Brian Durie.

Case studies were presented and the panel and audience would vote on a number of ways to treat the case. What became obvious was that the panel consistently gave the same answers, whereas the audience answers were not nearly consistent.

This could lead me to only one conclusion: the myeloma specialist are finally obtaining a consensus opinion on treatment but the general hematologist/oncologist (audience) has not yet reached the same level of congruence. So one of the most significant takeaways from the three hour symposium was the templates which were presented for both newly diagnosed and relapsed/refractory myeloma. This template is much like a Cliff Notes version of mSmart the Mayo Clinic template for treatment. You will note the newly diagnosed and relaspe slides below.

These slides show a greater consensus view of early treatment and relaspe from some of the most talented myeloma specialists in the world. Now if we could just get this knowledge to become “common knowledge” then most every myeloma patient would have a life expectancy twice the current national average. So it is today, but more important than 10 years ago to find a myeloma specialist to a treatment plan, which may be implements by your local hemotologist/oncologist.

Dana Holmes has recently provided her logic in a facebook post. Because it is so well written, I will post it seperately. She is writing it to her smoldering myeloma facebook group, but I would argue it is even far more critical if you have active myeloma, or are in your second or greater relapse.

Good luck and may God Bless your Cancer Journey. For more information on multiple myeloma survival rates and treatments CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1

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ASH 2016 – The IMF Gives A Summary Of Outstanding Improvements In Myeloma?

12/9/2016

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I often wonder why there has been such outstanding improvements in the survival and life expectancy for myeloma patients. As is the case with most success in medicine or science, it is the dedicated members of the teams assembled for the task. Would we have been on the moon had it not been for the formation of NASA? You must be able to assemble a team, coordinate their activities, develop goals, instill a team philosophy, and fund the effort. I am convinced the IMF(International Myeloma Foundation), the MMRF(Multiple Myeloma Research Foundation), and MCRI(Myeloma Crowd Research Initiative) are the vessels which have accomplished this feat.

I say this after watching Friday’s IMF meeting titled “TREATMENT ADVANCES IN MULTIPLE MYELOMA: EXPERT PERSPECTIVES ON TRANSLATING CLINICAL DATA TO PRACTICE. You can see the over 3 hour program at the link:

https://www.myeloma.org/videos/ASH-Satellite-Symposium-2016

What I am most impressed with is the level of talent which was on the panel for this presentation. We had Dr. Rajkumar, and Dr. Shaji Kumar from Mayo Clinic, Dr. Philippe Moreau of France, Dr. Jesus San-Miguel(seem to be the character of the bunch), and Dr. Bruno Pavia, both of Spain. This was moderated by the president of the IMF Dr. Brian Durie These myeloma specialists are exceptional, and assembled in the same room to freely provide their knowledge and treatment perspective to a filled conference room.

Some of my key take away were as follows:

These doctors left their egos at the door, and worked together as a skilled and talented team.

They truly liked each other, and would often help each other explain key points. They actually were having FUN!
They looked at real case studies and when the panel answered questions regarding this case, their answers were surprisingly similar. The audience however was not nearly as consistent. The case was discussed by a panel member and Dr. Durie again asked the same question and the audiences answers were now closely aligned with the panel.

The European contingency showed a little frustration because they knew some of the answers to the questions which included drugs which are not available in Europe. I think that would drive me nuts!

What this tells me is that the opinions of myeloma specialists are becoming far more congruent. These professionals have always been at the tip of the spear, and were aware of the most recent development; however their treatment philosophies were all over the map. This was mainly the result of inadequate availability of clinical trial data, meta data analysis from the SEER, CIBMTR, or analysis of their own data.

What this also indicates is the audience who consisted of many skilled professionals had not been as well informed as the expert panel. This highlights the continued importance of educational activities which the IMF has historically provided.

The topics and myeloma experts for this symposium were as follows:

Diagnosing MM: When Should Treatment Be Initiated?
S. Vincent Rajkumar, MD

Should We Be Using Risk-Adapted Therapy in Clinical Practice?
Shaji Kumar, MD, and Philippe Moreau, MD

How Should We Use Maintenance for Patients in Clinical Practice?
Bruno Paiva, PhD, and Jesús F. San-Miguel, MD, PhD

How Do You Choose the Best Treatment Regimens for Relapsed/Refractory Disease?
Philippe Moreau, MD

Where Are We Now and Where Are We Going With the Care of Patients With MM?
Brian G.M. Durie, MD, leads the panel discussion

This is an outstanding educational experience for all health care professionals who care for myeloma patients, and for patients and caregivers. For patients and care givers you will get an understanding of when myeloma becomes active, the importance of genetic testing, the new and critical roll or MRD testing, treatment guidelines for the newly diagnosed and relapsed/refractory myeloma patients, and what comes next on the treatment horizon.

The most important takeaway for me is myeloma experts are becoming far more consistent in their views, and now it is a matter of getting this information to the greater myeloma treatment community. Not every myeloma specialsit is the same, however with the new drugs, and growing mountain of clinical trial and meta data analysis available the treatment philosophies are similar. I will talk about a few of these subjects in the weeks and months ahead. Good luck and may you all have an excellent holiday season.

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Multiple Myeloma The Only Answer Until There Is A CURE.

ASH 2016: A Meeting of the Minds! Myeloma Specialists Come Together in Greater Consensus.

ASH 2016 – The IMF Gives A Summary Of Outstanding Improvements In Myeloma?

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