Who are the GREAT EIGHT of Multiple Myeloma Specialists?

3/28/2014

Since this post was first published I have gotten a number of comments about specialists who were not selected. I also placed a lot of weight on those who had published or provided exceptional survival rates. I did this because I believe you can not manage that which you do not measure.
However, many facilities that do not supply survival statistics use clinical trial results as a surrogate or substitute for actual survival data and treatment guidance. I also did not allow more than one from each facility. The most important takeaway for a myeloma patient is to have a myeloma specialist on your team, and you can find a listing of well over 200 if you CLICK HERE.

In my work at www.myelomasurvival.com, I have had the opportunity to interact with many myeloma specialists, review their survival and life expectancy data, observe their leadership in myeloma research and treatment, and their work with international organizations like the IMF and MMRF. It is my belief, a select few myeloma specialists stand above the rest. 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 exceptionally caring and kind individuals. 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.

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. If you can not, then selecting one from the list of myeloma specialists listed at the following link if you CLICK HERE.

What is remarkable about the GREAT EIGHT 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. Some of the feedback from the doctors on the list was just so thoughtful and meant so much to to us about our efforts to help the myeloma patient community, we just had to include it in this post. These included the following:

"Thanks for the honor. I am always humbled by the love and respect of patients. You in particular have been a wonderful resource for myeloma patients worldwide."

"Thanks Gary!"

"You are a gem and thank you so much!"

"Thanks for the great honor to be included in this group. "

"Gary: Thanks for including me on your list. We are updating our survival curves and should have data soon. It is amazing how much better our patients are doing over the past few years."

To these GREAT EIGHT, I am honored and thankful for all of their SUPER efforts. Good Luck and God Bless OUR Myeloma Journey.

83 Comments

Lori Kauzlarich

8/25/2015 11:57:22 am

I don't see the great Guido Tricot M.D on this any longer! What happened?

Gary Petersen link

8/26/2015 02:22:46 am

If I were to do it again I would have to expand the list. I think Tricot, Fonseca, Anderson, Van Rhee,Landgren, Morgan and a few more would have to be in my list of GREATS!

Dana Holmes

8/27/2015 01:24:22 pm

I cast my vote for the Super Scientist, Dr. Irene Ghobrial ! I would love to see an update Gary!! the Sweet Sixteen!!

Lisah Rankin

12/1/2015 08:21:03 am

Who would be on a "greatest list" for Florida location?

Cathy

7/16/2023 08:56:01 am

Lisa's, did anyone reply to your query re: a great Florida specialist?

Lori Kauzlarich

1/4/2016 01:34:28 pm

It's time to update the Great Eight list. I'm with Dana Holmes; let's see the Sweet Sixteen!!

carmen

8/1/2016 12:30:30 pm

please Gary let me know of a few you might know in the Illinois area if any???

Gary Petersen link

8/3/2016 07:04:42 pm

Carmen I provide a list of myeloma doctors on my web site at the link: http://myelomasurvival.com/myeloma-specialists-listing.html I have sent you a list of the Illinois area doctors in a separate email. Good luck and God bless your families cancer journey.

Tira

10/11/2023 11:24:31 am

Please send me a list of Illinois MM specialist also. Thank you very much.

Joy Tordini

10/30/2016 02:44:13 pm

I'M A 29 YEAR SURVIVOR BECAUSE OF DR BART BARLOGIE'S BRILLIANCE AND COMPASSION.. I HAD THE PRIVILEGE OF SEEING HIM IN LITTLE ROCK DURING HIS LAST SUMMER AT UAMS AS I WAS ALSO DIAGNOSED WITH SARCOMA. ONCE AGAIN, HE LED ME IN THE RIGHT DIRECTION. I LITERALLY OWE HIM MY LIFE. LOVE YOU DR. BARLOGIE, JOY TORDINI

Katherine T morgan link

3/9/2017 11:53:52 am

Joy,
Have you info about where Dr Barlogie is now?

Gary Petersen link

3/11/2017 05:22:59 am

Katherine, Dr. Barlogie is at Mt. Sinai in New York City. A link to his contact information is http://www.mountsinai.org/profiles/bart-barlogie

Grace Isaac link

7/25/2021 03:13:56 pm

Thia is inspirational, where is he located, in urgent need of a Dr. Whom has extensive knowledge in Multiple myeloma, God bless You and thank you. My number is
210 665 5153 please call

Pierre

4/8/2017 02:55:33 pm

Having waited for 3 months for start of bone marrow transplant process to start (the taking of her bone marrow), my wife has regressed and we are now told she has lost her chance for a bone marrow transplant. They now want to start her on Lenalidomide and Dexamethasone for life which now means 18 months or so! We feel we have just lost 10 years of life expectancy. What can we do?

Gary Petersen link

4/9/2017 09:18:48 am

Pierre, from your IP address you see to be near Quebec City, Canada. From most of what I have read Donna Reece, MD - Princess Margaret Hospital, Toronto, Canada is an internationally known myeloma specialist, and would be a great place for a second opinion in Canada, and in the US near you is Dr. Philip McCarthy Jr. - Roswell Park Cancer Institute, Buffalo, NY. Do not give up. I remember at UAMS meeting a woman who was told to get her affairs in order. She had 200 lytic leasons, was 45, in a wheel chair. The last time I saw here she was up and walking, her leasons were gone, and her bone marrow was clean. I say find someone to get those 10++ years back! Good Luck and may God Bless your families myeloma journey/Gary

Jenny Locke

4/13/2017 06:41:18 pm

My 41 year old sister was just diagnosed with plasmacytoma. Our oncologist in Miluskegin Michigan recommended a second opinion because she had not seen it present as hers has. Her PET came back with too many spots to count. She said cancer deep in the tissues and eventually will turn in to the palpable masses that she had originally discovered. Seven masses were taken out by a surgeon then diagnosis was made. University of Michigan is about 2.5 hours away and we have considered a second opinion there. At this point I am guiding her along with Dr Ginger Decker to get her body alkaline, detoxification, and super nutrition .

Gary Petersen link

4/19/2017 08:14:40 am

Jenny, sorry for the delay. I think you are so correct in seeking a second opinion. Dr. Jeffrey Zonder at Karmanos Cancer Institute
4100 John R, Detroit is an excellent specialist. He was at UAMS and worked with my doctor Dr. Barlogie, and I remember talking to a women who was told to go home and they could do nothing more for her. She went to UAMS, and her PET showed over 200 lytic leasons and she was in a wheel chair. The last time I met her she was walking, in CR, and all leasons were resolved. The contact for Dr. Zonder, and Univeristy of Michigan are at the link: https://www.themmrf.org/living-with-multiple-myeloma/find-a-treatment-center/ Good luck and God Bless your families myeloma journey/ Gary [email protected]

Dana

5/24/2017 11:04:36 pm

Hi there! I was recently diagnosed with smoldering myeloma. We are in the pittsburgh area do you have any recommendations on doctors in my area? Thanks

Gary Petersen link

5/25/2017 07:40:49 am

Dana, you have a skilled myeloma specialist in your area. David Roodman MD - University of Pittsburgh Cancer Institute, Pittsburgh, PA. A list can be found at the link: http://www.myelomasurvival.com/myeloma-specialists-listing.html
Good luck and God Bless your families myeloma journey/Gary

Butch Edmonds

5/26/2017 06:59:40 am

Currently I am the only one that knows in the family. My mother has asked me to assist with finding a multiple myeloma specialist or a oncologist that may also be connected to ME Anderson and that can validate her information she just received from her regular doctor out of Oklahoma. I have her in Texas now between San Antonio, Austin and Houston. She would like to not go to MD Anderson only because of past memories of a loved one. She has no problem with them its just she's a mess right now and feels it may be to much just yet. Her news is only a couple days old.

Gary Petersen link

6/8/2017 06:57:50 am

Butch, Dr. Robert Orlowski is an outstanding myeloma specialist. You can find his contact information at the link: http://faculty.mdanderson.org/robert_orlowski/
Good luck and God Bless your families myeloma journey/Gary

Sally mccarthy reiland

6/24/2017 10:24:53 am

I'm a ten year survivor of MMMT, a carcinosarcoma, and am on the yahoo MMMT survivor web site of that aggressive cancer. I have a friend who is now being treated for multiple myloma and he's not getting good numbers. He's at UPMC in Pittsburgh, and I'm wondering if he should try another doc? Advice appreciated.
[email protected]

Gary Petersen link

7/4/2017 03:38:09 pm

Sally, Dr. David Roodman at UPMC is the go to specialist for myeloma there. However, if he or you are not satisfied wth the results then you may want a second opinion from one of the doctors in this post. Dr. Barlogie is my doctor, however you can find a list of myeloma specialists at the link: http://www.myelomasurvival.com/myeloma-specialists-listing.html. Good luck and may God Bless you and your friends cancer journey/Gary

Diana Jandura

7/10/2017 09:06:07 pm

Hi Gary, Thanks for posting this "the Great 8" , I am Newly Diagnosed 10/2016 and lived in South NJ, Went over the bridge to Phila Pa for my 2nd opinion and all testing, then had to start fighting and looking up Top Doctors in MM...Found this Doctor online, sold everything and moved out to LA in 7 days to see Dr. James Berenson - IMBCR - Los Angeles,CA in NOV, Started my Treatments on 11/27/16...It's now 7/10/17 and I'm in Full Remission,,,I feel BLESSED to have found the Best !!! Thanks for posting this and I pray they All work together & find the Cure ♥

James Milber

7/23/2017 06:50:30 pm

My mom, age 68, was recently diagnosed with Multiple Myeloma. I don't know the specifics, but it seems to be one of an aggressive nature from the genetic scans. We live in San Francisco, and started her at UCSF but we are starting to have doubts about the care here----

I am thinking of taking her to see Dr. Berenson in LA ---- He makes the "great 8", and is in the same state as us. I really want my mom to have the best care available, wherever it is--- do you think we could put our faith into Dr Berenson's Myeloma center as a top notch treatment center, or is there an undisputed best place for her to receive treatment in America? I've heard a lot of people refernece Dana Farber & the Mayo clinic.

Most exciting to us is CAR T-CELL Trials being done in china by Dr Dr. Zhao which had an amazing response rate, and will be coming to America for trials in early 2018.

Any thoughts or recommendations would be appreciated. We are devestated by this news and I want to do whatever I can, wherever I can, to give my mom the best chance she has at surviving long enough to hold grand kids in her arm and live a decent age.

Gary Petersen link

7/25/2017 09:25:56 am

James, Dr. Wolff at UCSF is an excellent myeloma speciialist, and if he is not your doctor you may want to change to him. However, if you are not comfortable with your care or outcome then a second opinion would be a great option. Dr. Berenson is an excellent doctor and is one who has shown excellent results without stem cell transplant, and Dana Farber and Mayo have excellent doctors and great survival rates, and have several doctors on my list of specialists at the link: http://www.myelomasurvival.com/myeloma-specialists-listing.html Their are a lot of very good institutions and I happen to be beholder to UAMS, Mayo, and Mt. Sinai who have treated me, and especially to Dr. Barlogie of Mt. Sinai who turned my 3 month death sentence into 11 years of myeloma advocacy and counting. You have many choices and with the explosion of research, new drugs, and combination treatment a outstanding myeloma specialist is a MUST HAVE. Good Luck and may God Bless your families myeloma journey and many years of doting over grandkids!/Gary Petersen

Sasha

7/27/2017 02:00:51 pm

Hi, my father has been diagnosed with multiple myeloma and is currently undergoing 4th round of chemo.
Do you have any recommendations for specialists in the United Kingdom?
Much appreciated, thanks!!

Gary Petersen link

8/1/2017 10:53:36 am

Sasha, I am not that familiar with Myeloma Specialists in the UK, but Dr. Morgan of UAMS came from their and I will blind cc him and if he knows of some he will contact you directly. The best I can do is to provide members of the International Myeloma Working Group who are from the UK. These members are as follows. I see from your IP you live in Greenwich near London, and Dr. Morgan was from London.
Good luck and God Bless your families myeloma journey/ Gary Petersen

Keith Wheatley, MD, University of Birmingham, Birmingham, United Kingdom
Raymond Powles, MD, Parkside Cancer Centre, Wimbledon, London, United Kingdom
J. Anthony Child, MD, University of Leeds , West Sussex, United Kingdom
Jenny Bird, MD, Bristol Haematology and Oncology Centre, Bristol, United Kingdom

Monika

9/21/2017 09:05:05 am

Greetings
Recently came to Pflugerville, Tx for a family emergency and it looks like I'll be here for a while. With a diagnosis of Multiple Myeloma, I am looking for a Great physician and hospital. I've visited Seton Williamson Hospital and I love the care they give, however I don't believe they have any physicians that specialize in
MM nor are they a MM Center.
Please advise. Thank You in advance.
Monika

Gary Petersen link

9/21/2017 10:33:02 am

Monika, I see no myeloma specialists in the Austin area, however MD Anderson is one of the best in the world, and I can not speak more highly of Dr. Orlowski. What many people do is to consult with a myeloma specialist like Dr. Orlowski and have the day to day follow up at your local hematologist oncologist. My primary doctor is Dr. Barlogie at Mt. Sinai in New York and my local doctor is at Mayo in Jacksonville, Fl. Good luck and may God Bless your families myeloma journey. Gary

NICK MILIC

9/22/2017 01:52:38 am

I am diagnose with multiple myeloma I looking for best hospital in word to treat my cancer of curs ALTERNATIVE WAY please help me with no personal interest. THANK YOU ALL

Gary Petersen link

9/27/2017 06:25:30 pm

Nick, A listing is at the link: http://www.myelomasurvival.com/myeloma-specialists-listing.html If you look at the list you will find a number of great hospitals. It is up to you to become your own best advocate and find the one that suits your needs. Some of the highest profile are the following.

Dana Faber
Memorial Sloan Kettering
Mt. Sinai
MD. Anderson
UAMS
Mayo Clinic(all Locations)
Medical College of Wisconsin

Monika

9/27/2017 04:37:56 pm

Greetings Gary:
Thank you for your info. My thoughts exactly...to do the same I did at home, have a local and see the "main" at Penn q 3 to 6 months or as needed. From Pflugerville to Houston is a 3 hour ride so...that would work. I'll make the connection with Dr Orlowski. Thanks again!!
Make it YOUR CHOICE to Make it a GREAT EVENING!!
Monika

Charlene

11/21/2017 08:23:43 am

My husband was diagnosed with multiple myeloma about a month ago through a bone marrow biopsy. His has been started on steroids and a chemo injection once a week. The oncologist won't give us a stage or life expectancy. He has no bone lesions yet. Are there any specials in Rochester New York that we could go to?

Gary Petersen link

1/24/2018 03:11:12 pm

Charlene, Dr. Philip McCarthy Jr. - Roswell Park Cancer Institute, Buffalo, NY is just is just over an hour away. You can get a second opinion with him and he will work with your local oncologist to get much of the testing and treatment done locally. Dr. Richardson at Dana Faber in Boston, Dr. Barlogie at Mt. Sinai, and Dr. Landgren at MSKCC in New York are excellent as well. Good Luck and may God Bless your families myeloma journey/Gary

Lynn

1/24/2018 08:28:30 am

My brother in law was diagnosed about two years ago with multiple myeloma. He is currently seen at Penn and he has just been given his last option of medication. He had a stem cell transplant which put him into remission for exactly one year. His IGA is almost back up to its highest number. Any suggestions for a second option I. The Philadelphia area

Gary Petersen link

1/24/2018 05:41:32 pm

Lynn, sorry to hear about your brother in law. Ed Staudtmaer, MD - Penn Medicine, Philadelphia, PA Is the go to myeloma specialist at U Penn. If your brother in law is at the end of the approved available drug. You may want to look at the available Clinical Trials. Car T is showing great promise and Dr. Carl June at U Penn is doing some work on CAR T cells. In addition Dr. Landgren at MSKCC in New York is involved with a very promising CAR T program as well. Also RRMM trials using KRdD + transplant has shown some great results, and one these specialists could suggest the best trials for your brother in law that would provide many many more possibilities. A great article about CAR T at the NIH is at the link: https://www.myelomacrowd.org/my-myeloma-and-car-t-cell-experience-by-daniel-reibow/
Good Luck and God Bless your families myeloma journey/Gary

Kay

1/30/2018 01:00:47 pm

I'm looking for a MM specialist in Virginia for a second opinion- any suggestions?

Gary Petersen link

2/3/2018 05:33:26 pm

Kay, a list is at the link: http://www.myelomasurvival.com/myeloma-specialists-listing.html. I did not find any in Virginia but Dr. Saad Usmani is in Charlotte NC. Also Dr. Borrello at Johns Hopkins in Baltimore. Good luck and God Bless your myeloma journey/Gary Petersen

Jeff

2/23/2018 03:04:59 pm

I noticed that your local Dr. is at the Mayo clinic in Jax. My local Dr. is in Orlando but considering Moffitt in Tampa for my SCT because I have family living there for support. What's your opinion about Moffitt and maybe a Dr. that bubbles up to the top?

Corazon S Litorja

4/11/2018 08:06:54 am

Hi Gary, I am a state 3 advance MM patient with diagnosed in Feb 2016. Had a successful ASCT in Sept 2016. Had a very short remission in 2017. However, it was later found in Jan 2018 after several MRIs/Scan/s due to severe lower, upper back and right chest of the relapse after on Velcade maintenance in May 2017. Had a visit with Dr Peabody, osteo/onco at NW Hospital in Chicago and he recommended radiation and new therapy to my hematologist/oncologist at Kellogg Cancer in Glenview, IL. I have an appt with my onco on April 12 to discuss about the radiation and change of treatment. Also, I plan to see Dr. Mehta, MM doctor at NW Hosp in Chicago for second opinion. Any opinion is greatly appreciated. Love reading your comments/thoughts. Thank you.

Ranya

4/16/2018 01:48:57 pm

Hello Mr. Petersen,

The content you provide is truly valuable, and I want to thank you for that.

I reside in Los Angeles, California, whereas my father who was diagnosed with MM a few years ago lives in Iran. Unfortunately, I got the news yesterday that his MM has relapsed, and the doctors were finally able to diagnose that his MM has metastasized into his CSF, which is very uncommon. His doctors in Iran cannot provide him with adequate care, and they've subsequently told him he needs to receive his radiotherapy in another country. I wanted to know based on the specifics of his case, where would be the best hospital or institution to contact in Europe to see whether they would be willing to take on his case?
Do you have any recommendations for specialists in the United Kingdom?

Additionally, should we look into clinical trials? or will the hospital accepting his case inform of us of whether participating in clinical trials and which trial to participate in will be entailed or not.

I would truly appreciate your advice in whatever capacity in regards to this matter, as our time to take action is very limited.

Thank you.

Kathleen Kruzel link

4/17/2018 03:26:42 am

I'm seeing Dr Shapiro West Palm Beach Florida. I was just diagnosis with MM.

Martha Griffin

5/2/2018 09:17:21 pm

Hi! My aunt in Ecuador has just been diagnosed with multiple myeloma stage 3. It was discovered due to a small fall she had and she fractured her femur. She has a 12 yr old son so she wants to give it her best shot at it and I’m not confident that she will have a good doctor in Ecuador. I live in Chicago and she is open to coming here or elsewhere in the US. Are there really good specialists here in Chicago?
Also, do you know of any institution in the US that would help someone from overseas with reduced fees?

Tammy Gossel

9/14/2018 12:00:39 pm

I live by Tucson, AZ, and am looking for a specialist. I'm also 2 hrs from Phoenix. My last tests by Dr Anwar, were all good. Bone Marrow Biopsy, pet scan and all the other blood tests and X-rays. I harvested my stem cells but haven't had the stem cell transplant due to dental work I'm having done. I'm also not sure I want to have it now either. Dr Anwar is leaving Tucson and my dr that referred me to him, Dr Aluri, is now also leaving. Need a dr.
Thanks!

Jonathan Sacks

7/9/2019 07:58:27 pm

My dad was just diagnosed with Multiple Myeloma and we are looking for the very best Dr with the highest survival rate in the NJ/NY area. Currently the plan is to have him treated at Hackensack Hospital however not a Dr on your list practices at this hospital. Does anybody have a doctor they would recommend highly in the tri-state area?

We love our Dad and want him with us for years to come. Thx.

Cindy

7/17/2019 10:00:01 pm

My husband just went through diffuse large B Cell Lymphoma a year ago. He was declared in remission in Jan and then in March they found a Plasma Cytoma. We have been going to CTCA in Ga but I do not feel that they are taking this Cancer seriously. These 2 totally different cancers presented in the same place in his face. They keep saying “this is very rare.” But they just don’t seem attentive now that the Lymphoma is gone. They have him on a Chemo pill to stave off the Lymphoma. Any suggestions in NC? We are in the Mountains so also near Tennessee and SC. Thanks.

Kelly Marsh

7/20/2021 08:55:15 pm

Cindy, did you ever get a response? We recently moved to the mountains in NC near the TN/GA/SC borders and need a MM specialist for my husband. Previously at Moffitt in Tampa. Any suggestions welcomed!!

Sherry Gerow

9/7/2019 06:44:17 pm

I live in Vancouver BC and am newly diagnosed with MM..hip bone and T5 being rediated, then start chemo. Would like a second opinion. Do you recommend someone in my area??
Thank you.

Gary Petersen link

9/12/2019 05:02:34 pm

Sherry, I did a google search, and I can not find a myeloma specialist in Vancouver. I do know the Seattle Cancer Care Aliance has some excellent doctors, and could provide a a second opinion if you provide the info from your oncologist. Sorry I can not be any more helpful. Gary

don atkinson

11/10/2019 07:10:17 pm

sherry sorry to hear of your diagnosis , 3 weeks ago was diagnosed with MM lytic lesions through my back, shoulders,pelvis, ribs and spine with a compromised T5. just started chemo and looking for another doctors opinion. we are on Vancouver island

Ricky

9/12/2019 09:01:11 am

Hi Gary I've come across this blog and list via a google search. My mom was just diagnosed a couple days ago with multiple myeloma and will be 70 next month. She lives in Silver Spring, MD (D.C Area). She is likely going to retire anyways but this just expedites things. Her and my dad will either stay in the DMV (DC/Maryland/Northern Virginia) area or move close to my sister in Tampa so that she can help with her care. Ive done some research and have seen good things about Georgetown University Hospital's Myeloma department.

Do you recommend any multiple myeloma specialists in the DMV area and/or in or around Tampa, FL??

Gary Petersen link

9/12/2019 04:57:33 pm

Ricky, Ivan Borrello, MD - Johns Hopkins Sidney Kimmel Comprehensive Cancer Center, Baltimore, is exceptional, as is Melissa Alsina, MD - Moffitt Cancer Center, Tampa, FL. A listing of many myeloma specialists is at the link: http://www.myelomasurvival.com/myeloma-specialists-listing.html and on the bottom of the home page Multiple Myeloma - Survival Rate Statistics by Hospital

Multiple Myeloma - Survival Rate Statistics by Hospital

Multiple Myeloma Survival Rates and Life Expectancy by Hosital and Doctor

is a great list of myeloma information resources. A good starter read might be an article I wrote at the link: http://myelomasurvival.com/myeloma-blog/multiple-myeloma-2018-update-why-do-people-beat-the-average-myeloma-life-expectancy-prognosis-or-how-to-improve-your-multiple-myeloma-survival-rate

Good Luck and God Bless your families myeloma journey/Gary Petersen

Julie Pinney

10/7/2019 04:50:19 pm

Do you recommend a specialist in the San Diego area?

Gary Petersen link

10/8/2019 08:03:31 pm

Julie, Myeloma Crowd has two listed for San Diago at the link: http://www.myelomacrowd.org/myeloma-directory/

Ronda May

10/30/2019 10:42:35 pm

Hi Gary. Do you have any insight on Dr or hospitals that specialize in IgA MGUS/ SMM? I’m in Arkansas. UAMS has gone through some changes and not highly recommended by my hematologists?

Irela Suarez

11/9/2019 07:49:57 am

Thank you.
My husband was just diagnosed with multiple myeloma. Can you recommend a specialist in Florida?

Gary Petersen link

11/24/2019 06:13:44 pm

Irela, There are a number of excellent myeloma specialists in Florida. I have a listing of specialists at the link: http://www.myelomasurvival.com/myeloma-specialists-listing.html
In addition, there are additional links to lists by Myeloma Crowd, MMRF, and others. Good Luck and may God Bless your families myeloma journey/Gary

Lori DiFabio

12/2/2019 04:25:40 pm

Hi. My beautiful and loving mother was just diagnosed with MM. We live in the Philadelphia area and want to take her to the best doctors for evaluation and a second opinion anywhere in the country. Doesn’t matter where. Can you please recommend the best doctors in the country? We will travel anywhere. We want to take her to the best docs!! Thank you very much.

Gary Petersern link

1/20/2020 07:46:12 pm

Provided a response by email!

Barb finnin

1/5/2020 07:35:26 am

My sister has been treated for multiple myeloma for the past 5 years. Her dr says her treatment isn’t working and her numbers are going up. She lives in Steubenville Ohio. I live in Denver Colorado. Are there any amazing doctors in either area that you would recommend? She is in her 70’s.

Gary Petersen link

1/20/2020 07:47:18 pm

Provided a response by email.

April Muir link

1/20/2020 03:11:03 pm

Hi Gray, My aunt was just diagnosed with MM and has acute anemia and kidney impairment. We live in North Carolina. Are there any great Drs @ Duke that you would recommend?

Gary Petersern link

1/20/2020 07:40:22 pm

April, Cristina Gasparetto, MD - Duke University Medical Center, Durham, NC is an excellent choice is Saad Usmani, MD - Levine Cancer Institute, Charlotte, NC. Good luck and may God Bless your families myeloma journey/Gary

Pam

1/25/2020 07:18:24 am

Gary...Dr. Berenson is in private practice. My understanding is the his life expectancy results are not published with verification. This is what’s been told to me by the meaning hospital for mm. Where the hospitals have to publish their study results and are compared across the country. What criteria are you using to list him?

Gary Petersen link

1/25/2020 09:27:45 pm

Pam, very few facilities provide survival data, and those that do generally are self reporting. No one is required to report survival results other than on a blind basis to NCI (National Cancer Institute), I believe they can get their own data but the only one I know which publishes this data is Seattle Cancer Care Alliance, and maybe the Cleveland Clinic. Members of the CIMBCR do post data on allo transplants but not for auto. Dr. Berenson has an excellent reputation, has provided his data which is outstanding. Only locations which conduct Clinical Trials are required to report data, have it verified, and audited. The one thing I will say about Dr. Berenson is that is not a proponent of Stem Cell Transplant, but his results are as good as locations which do SCT. Best Regards/Gary

Hector

3/9/2020 09:13:10 pm

My 32 y.o. son has MM (3years). I have smoldering myeloma (1 year). I don't think the care either of us is receiving is taking us in the right direction (different providers). Who is the best choice for MM care in the LA, Calif area? I would love to be able for my son to see Dr Richardson at Dana Farber. But economics and insurance issues prevent this. Any recommendation in the SoCal area?

Edward

3/18/2020 01:29:58 pm

I'm now in Sarasota, FL but was orig dx'd in Massachusetts at a Dana-Farber satellite: Milford Hosp. I started Tx under a local Heme/Onc but was eventually refered to Dana-Farber Boston for guidance and I was seeing Paul Richardson. This continued from 2006-2010 when I moved back to Florida. I now see Dr. Luis Chu at Florida Cancer Specialists at the Sarsota location. He's quite bright but not an MM specialist so sent me to Moffitt Cancer Ctr in Tampa to see Dr.Baz in referral recently and he agreed with everything Chu is doing except started me on oral PenVK plus oral Perides swish and spit to treat my Osteocrosis of the Jaw (ONJ) which I developed from using bisphosphonate for my boney pathology due to MM. I'm probably going to solicit the opinion of Dr. Marks in Miame as he has, it is said, special expertise in ONJ just to be sure my ONJ Tx is optimized.
So, there are some folks in the SW Florida area if you happen to live around here. I noticed that Dr. Baz is prolific in research papers. I have not ferreted out his bibliography as I did with Paul Richardson. Dr. Richardson's name on what seems to be like 1,000 + papers. I searched those papers for Dr.Baz's name and found it on hundreds of Richardson's paper and vice versa. So, Bax seems to be academic as is Richardson. Richardson is OK with seeing him every year or two if you wish. I visit relatives in Mass about that often and I have seen him but I worry if he doesn't agree with my Tx will it ruffle the feathers of my local Heme/Onc who has kept my numbers low now for 10 years?

Laura Snell

4/13/2020 05:20:47 pm

I was diagnosed with MM December 2018, went on oral DRV, had stem cell transplant April 2019, relapsed Jan 2020. Bone marrow biopsy shows 90% plasma cells. My hematologist (Hollings Cancer Charleston, SC at MUSC) has me on Krypolis infusion, Pomalyst, Dex 3 weeks on 1 week off. Still in my first cycle. Had to stop Pomalyst last week liver enzymes ae up. He suggested I get a second opinion. I live in SC but am wiling to go where the best survival rate is. Beside MM, I am a healthy 66 years old white female with no co morbidities. I would appreciate your input. Thank you Laura Snell

Janine Pieper

4/17/2020 08:09:15 pm

I went from having a diagnosis of MGUS for about 8 years to progressing to a diagnosis of Multiple Myeloma ISS Stage 3 after having a bone marrow biopsy last week. I have a PET scan scheduled for next week. My numbers started going up over a period of two months. I believe it was stress. Regardless, My oncologist/hematologist prescribed Revlimid (just ordered, my co-pay $2700 a month), Velcade shot, not approved by insurance yet, Dexamethasone 10 4 mg. pills once a week, and valtrex daily to avoid shingles. I live in Camarillo, CA. I contacted Keck, USC, but have not heard back, and Cedars, Sinai. Is there someone that you recommend for a second opinion regarding treatment? I'm scared.

T Lewis

7/10/2020 11:15:46 pm

Thrilled to find this and that you are able to advise - Do you a list for other countries- I'm in Japan ??
The sites are so insistent on getting experts but all seem to be US!
My doctor is not an mm specialist- and I worry. I was misdiagnosed fir 2 years and have had a few 'lucky ' escapes - hollow bone marrow missed and only caught when dangerously close to shattering - I'm 2 years in and just need someone I can check treatment courses with?

Ruth D

10/13/2020 12:08:39 am

Can you recommend treatment family that’s best for multiple myeloma of 80 year old female in Iowa? Or where not to go? We find out end of October if MM is for sure the diagnosis and if it is, best treatment possible is desired and MD Anderson is fine. Yet I’m not confident it’s necessary to go that far but if it’s best we can and will and that’s the patients desire. We want to make sure that’s necessary. Thank you.

Paul L

10/21/2020 07:22:27 am

Hi Gary, I’m searching for a MM specialist preferably at a MM center near me for my Dad. He was recently diagnosed stage 2 we don’t have the genetic specifics back yet to tell how high risk. He is 77. I’m interested which of the top specialist have the “less is best” philosophy in their treatment as I’m worried about too much to toxicity and side effects at his age. Thanks in Advance it’s not confusing looking for a specialist.

Gary Petersen link

10/25/2020 12:56:17 pm

Ruth D, The University of Iowa used to have a solid program, but has had a lot of turnover recently. If you are close to Mayo In Rochester both Dr. Shaji Kumar and Dr. Rajkumar are exceptional. A page from my blog has several lists of myeloma specialists which could be closer and meet her needs.

Sandy Thurber link

11/10/2020 01:36:22 pm

Looking for top notch doctors. Had stem cell transplant in 2016 and just looking ahead. I’m 4 1/2 hours from Mayo in Minnesota and 1 1/2 hours from Medical College of Wisconsin. Looking for an exceptional doctor.

Megan H

12/28/2020 07:20:45 pm

Hi there! My mom, just 59 years old, was just diagnosed with myeloma and amyloidosis. I’m reading everything I can find in hopes to help get us the right team of doctors. We are in the South Bend, IN area. Would you have any advice as to where to go? Chicago is nearby, Indianapolis, MI easily accessible, OH as well. Would love any help as to where to start. Thank you so much in advance.

Ardina R

1/6/2021 04:05:32 am

Hi Gary,

My father was just diagnosed with MM and Amyloidosis. His current doctor has recommended Chemo therapy but I’d love to find a second opinion in Toronto. Do you have any recommendations for specialists in Sunnybrook Odette center? Appreciate any feedback you can share.

Thanks!

Twila Baca

1/14/2021 05:18:36 pm

Need a Dr that specializes in plasma cytoma multiple myeloma in New Mexico or near. Please get back to me, my mom needs one ASAP thanks.

Alicia

2/2/2021 09:20:49 pm

Good evening. Who would you recommend in the greater Washington DC or Baltimore regions? If you do not have a specific name, do you think Georgetown, University of MD, or Hopkins is the better choice. Thank you.

Robert A Lammert link

3/1/2021 12:54:01 pm

I live in Las Vegas NV & am seeing Dr Berenson in Los Angeles for multiple mylenoma
We are old & in poor health and would like a backup in the Las Vegas valley, possibility Incase the doctor retires or because of age & health we are unable to continue with this great doctor - I would never change unless conditions force it, Dr Berenson is a great man who really cares about his patients and has given me such great care

Margaret Depue

6/17/2021 10:01:48 am

After suffering from numerous compression fractures over the past five months, I was diagnosed with plasma cell myeloma. I am 76 and was very active until suffering the fractures . I read with great appreciation your listing of the great 8 myeloma specialists (including updates), and am trying to get an appt. with Dr. Kumar at Mayo Clinic, but wondered if I'm overlooking a great specialist closer to my home in Virginia. I am willing to travel anywhere to get the best care. Thanks so much!

Jess G

6/22/2021 09:09:33 pm

Hi,

My mom was diagnosed with multiple myeloma and colon cancer . Looking for recommendations on excellent oncologists specializing in MM in Vancouver or Surrey, BC Canada.

Christy link

11/30/2021 11:34:45 am

Hi Gary,
Thank you so much for this valuable information. My son, age 32, was diagnosed with multiple myeloma four months ago with three lesions. Went through radiation, and his blood work came back good. He had a bone marrow biopsy and there was 0% cancer cells. We’ve had a couple of second opinions and they range from, start chemo right away or let’s wait and monitor closely. We live near Glenwood Springs, CO and I was wondering if there was a doctor you recommend in the Denver area or anywhere in Colorado? We would of course be willing to go anywhere in the U.S if that would be best for him.
Thank you for your help!
Christy

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Who are the GREAT EIGHT of Multiple Myeloma Specialists?

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