How do you define a Multiple Myeloma Specialist?

4/29/2012

It is funny how some people just cut to the chase. One recently diagnosed patient has been emailing me and asked a great question: "How do you define a multiple myeloma specialist?" She really made me think. First, I thought, well,after a time you just know! Sure isn't a very good definition for the newbie! As as a longer-term survivor, you see the same names come up in research: Barlogie, Rajkumar, Anderson, Durie, Polumbo, San Miguel, Richardson. So how do we accurately define the term Multiple Myeloma Specialist?

One way to locate a specialist is to find practitioners at the institutions that have the best survival rates as compared to the SEER data, however at this point the specialists who post this data online or have provided it to this web site are limited. I have found that if someone is a MM specialist, their time is in such great demand that they often do not have the staff or resources to provide accurate data on a timely basis. When I check back with them after two months, they are truly sorry for the delay in providing data, and are committed to this project, but are too busy saving lives, and have not had an opportunity to provide the data yet. But they will, they assure me. With time the information will come and the results will show us who the best of the best are. So how do we tell now?

There is no degree called Multiple Myeloma Cancer Specialist that I am aware of. So given only the data that is posted here on this site and the knowledge I have obtained over the course of six years, I will provide you with what I believe is the definition of a Multiple Myeloma specialist.

Characteristics of Multiple Myeloma Specialists

1. First, they are usually hematologist-oncologist who see at least 100 patients each year.

2. They practice at hospitals that have a defined MM treatment program or department.

3. They attend the big MM seminars, ASH (the American Society of Hematology) and ASCO (American Society of Clinical Oncology).

4. They have MM publications and have most likely given presentation at ASH and ASCO.

5. They participate in clinical trials for MM.

6. They usually are located at larger, more prestigious hospitals like Mayo Clinic in Rochester, Dana-Farber Cancer Institute, MIRT (Myeloma Institute for Research and Therapy) at UAMS, Moffitt Cancer Center, M.D. Anderson Cancer Center et al.

7. The facility or department where they are located has myeloma in the name, like UAMS-MIRT or IMBCR( Institute for Myeloma & Bone Cancer Research).

Another step in finding a specialist near you is to search the web using the key phrase "(insert your state) Multiple Myeloma Treatment Centers", or "(insert your state) Multiple Myeloma Treatment Programs. If you find a Multiple Myeloma specialist, or you want to get more information on one of the doctors listed here, you can search his name as follows: "Dr.(insert the name) Multiple Myeloma Specialist". If you get a lot of great multiple myeloma information, chances are you have someone who is 95% more qualified than your average local oncologist. Just try this with a google search of Dr. Rajkumar, Dr. Barlogie, Dr. Berenson,
Dr. Durie, or Dr. Palumbo.

I hope that this helps you to find a multiple myeloma specialist, and "May the odds be ever in your favor!" Sorry, just saw the movie Hunger Games and their famous quote seems so appropriate for MM patients.

May God bless your MM Journey/ [email protected]

85 Comments

Carolyn Germain

2/24/2015 09:41:31 am

Hi Editor. Found up our website and have a question. I was just diagnosed with MM at Stanford and am going to start treatment there on Monday. I know you list UCSF but Stanford is a mile from my house. I am seeing Dr. Steven Coutre there. My darling sister-in-law wants me to get a second opinion at UCSF but I am in Acure Kidney failure, have anemia and feel awful so I really want to get on treatment right away. Do you have any opinion on Stanford and my dr? Thanks so much for your time.

Gary Petersen link

2/24/2015 11:29:30 am

My read on Dr. Steven Coutre is that he is exceptional in the area of leukemia, with most of his publications, clinical trial are in that area. Dr. Michaela Liedke seems to be the Myeloma go to doctor at Stanford. Dr. Wolff is a multiple myeloma specialist at UCSF, and is listed on my site. Acute kidney failure provides some special challenges, and I would look to someone like Dr. Wolff at UCSF as the closest to you. My doctor was Dr. Bart Barlogie at UAMS in Little Rock and I had dialysis dependent end stage renal failure. I am now a 9 year survivor and my kidney function improved to the point I no longer need dialysis. I can always recommend Dr. Barlogie who gave me a kidney friendly treatment regimen. I originally was treated at Mayo Jacksonville and with Cytoxin, thalidomide, and dex, and chose to go to UAMS for my stem cell transplants because they had a 7 year life expectancy listed compared to Mayo's at 3 years. I opted for the extra years. I agree with your sister, and you can do this now or after your first round of therapy.

Good Luck and May God bless your families myeloma journey/Gary

Amy

10/14/2016 08:17:47 am

Any advice for Phoenix, AZ area? I know of Mayo Clinic but my husband is being referred to Ironwood Cancer Center.

Gary Petersen link

10/15/2016 02:08:47 pm

You could not do any better than Dr. Rafael Fonseca of Mayo Clinic. Dr. Fonseca is an exceptional myeloma specialist. I have never heard of Ironwood Cancer Center, and have not heard of any of the people there that treat myeloma. I will blind cc Dr. Fonseca, and if he can help you at Mayo he will contact you, or maybe he has more info on the Ironwood Center. Best Regards/Gary

Susan

12/3/2016 08:13:39 am

I have had SMM for 7 years and a recently BMB shows the plasma cell load has increased from 10. something to 20. My current MD is Dr. Comenzo at Tufts MC in Boston whose specialty is amyloidosis (I have light chain myeloma)- but I do not see that program listed as a myeloma center and I want to give myself as much of an edge in treatment as possible.Do you have any information on the Tufts program?

Gary Petersen link

1/3/2017 08:57:59 am

Sorry for the delay. Susan I think you are wise to few the universe for smoldering myeloma care and treatment. If there is one area in myeloma getting focus it is the belief early diagnosis and treatment of high risk smoldering myeloma is important and can lead to cure. Dr. Rajkumar has an excellent presentation on smoldering myeloma at the link: http://www.bloodjournal.org/content/125/20/3069 Dr. Irene Ghorbrial of Mass General is following smouldering patients as part of a world class study to follow and treat as early as needed. I will blind cc and hope she will follow up with you. At 20% plasma cells you may still be smoldering if your light chain ratio is less than 100 and you have fewer than two focal lesions. Dr.Shaji Kumar of Mayo clinic which was featured on Cure Talks and discussed the ASCENT trial with a goal to cure 50% of high risk smouldering patients. Link: http://www.curetalks.com/event/rsvp/Understanding-ASCENT-Clinical-Trial-for-High-Risk-Smoldering-Myeloma-Patients-/255/ Good luck and may God Bless your families myeloma journey. Gary

Susan

12/3/2016 08:38:36 am

I sent a question a couple of minutes ago but failed to mention that I live in Rhode Island. There are no centers in my state and I will travel for care. Thank you.

Joanne

12/28/2016 08:59:15 pm

My husband has just completed his third sct at VCU in Richmond, Virginia. I do not see their program listed in your info. Thoughts, comments?

Gary Petersen link

1/3/2017 01:50:29 pm

Joanne, If you go through the search method I outline in this post, their just is not a lot of info which comes up for VCU. I know the Myeloma Beacon lists it as a myeloma center, but I just do not see VCU come up much at ASH or ASCO. Nor do I hear of anyone from that location who comes to mind as a myeloma specialist. They may be just great, but they just do not have the visibility I would expect if they were a top myeloma center. Another check would be how closely their program has mirrored the mSmart program from Mayo at the link: mSmart.org Good Luck and may God Bless your myeloma journey.

Carolyn Sterling

10/26/2022 02:01:54 am

VCU has a new myeloma specialist Dr Mann.

sara

1/20/2017 11:24:05 pm

Pls suggest a good MM specialist in Northern Virginia area. My husband has gone through Rev+Vel, Radiation, SCT plus Rev+Carfilzomib. But his maintenance was stopped over 2 months ago and he is in sever pain. His Dr. wants to put him on Darzalex, however, we are hesitant because of past Dr. relations.

Gary Petersen link

1/22/2017 07:30:41 am

Sara, there is a list of myeloma specialists at the link http://www.myelomasurvival.com/myeloma-specialists-listing.html
John Hopkins is not that far away and it has three great specialists.

Ivan Borrello, MD - Johns Hopkins Sidney Kimmel Comprehensive Cancer Center, Baltimore, MD

Also a great doctor in Charlotte, NC is
Saad Usmani, MD - Levine Cancer Institute, Charlotte, NC

One thing for sure, you do not have to live with a bad relationship with your myeloma doctor. Good Luck and God Bless your families myeloma journey.

Lisa Dick

3/18/2017 06:45:11 pm

Gary,
I have been advised to seek treatment from a cancer center for multiple myeloma and I live in KY. Can you tell me which is the best place close to me? I am in good health other than the cancer. Thanks

Gary Petersen link

3/19/2017 08:25:07 am

A listing of myeloma specialists can be found at the link www.myelomasurvival.com/myeloma-specialists-listing.html
Dr. Saad Usmani would be close if your are in the east of KY, and Dr. Ravi Vij would be close if you are in the west of KY.

Angela Perez

4/7/2017 12:28:10 pm

Hi Gary, my name is Angela Perez I am a 38 year old mother of 3 who has just been diagnosed with stage 3 multiple myeloma in January of this year. I have pretty extensive bone damage, but surprisingly all my blood tests are all pretty normal. I do not secrete the M protein, so if my leg would have never gave out on me, I probably never would have discovered that I have this disease. I currently have Kaiser Permanente as my insurance and am receiving treatment there. I'm looking to go for a second opinion at Mayo Clinic in Arizona. I was going to go see Dr. Berenson but several oncologists in San Diego advised against it for some reason, they said they felt strongly that I do not go see Dr.Berenson. I'm so confused I don't know what to do. So, I'm opting to go to Mayo Clinic in Arizona and see Dr. Fonseca. I would love to pick your brain about how you travel to see your specialist. By that I mean Do you just go for check-ups, and get treatment closer to home, or how does this whole process work. I'm planning to switch to a PPO insurance here at work and that will provide me better access to specialists, including the doctor you see in New York. I'm even willing to make an appointment in New York if it is going to save my life. I'm just beyond confused as to how you make all of this work not financially but treatment wise. I'm sorry if I am rambling on and on and I hope this makes sense. I'm at work on my lunch hour. I would assume that participation in clinical trials would be difficult if your doctor isn't close enough. But I would love to work with a specialist to coordinate my treatment with a willing local oncologist. Do you know if the specialists are open to this? Any feedback you have for me would be appreciated. You can also e-mail me separately or perhaps we can discuss over the phone. I would like to get involved anyway I can with the Myeloma community. I feel so strong and healthy I can't believe that I have this disease sometimes, the only reminder is the excruciating bone pain. I appreciate your time on this website and all that you do for the Multiple Myeloma community!

Gary R. Petersen link

4/8/2017 09:15:38 am

Angela, Dr. Berenson has some great survival numbers, but does not believe in transplant. Transplant gas become part of the standard of care for those that are transplant elegable. For someone who is so young and is not satisfied with 10 or even 15 added years of life, but wants a cure, I think like me you would like to go somewhere where they report 50% cure rate. Dr. Fonseca would be a good choice, Dr. Barlogie my doctor is outstanding, as is Dr. Van Rhee or UAMS, Dr. Saad Usmani, Dr. Parmeswarran Hari in Milwaukee. There are many other good choices, but you want someone who does MRD testing, FISH and GEP profiling, and has a mind set to CURE and to hit it up front hard when the myeloma is naive to any treatment. Good Luck and God Bless your families Myeloma journey/Gary

Jim Gornick

1/5/2019 07:37:13 am

Hi Angela
My name is Jim Gornick live in Colorado and considering Mayo in Arizona my wife has had a similar situation as yours wondering if you ar available for a chat ? Thanx Jim

Barbara Foster

4/18/2017 05:21:00 pm

My husband has MM was on Bortezomib and Revlimid . They have stopped the Bortezomib and he is currently taking Revlimid 10MG 21 days on1 week off. They said he was a candidate for Stem cell Transplant now today we are told to wait another 6 months to see how things progress. We are seeing doctors at the VA Hospital in Durham. I feel we should have a second opinion. We live in West Virginia but are will to travel. He also has private insurance through Medicare and Aetna and is 62 years old. Please advise

Gary Petersen link

4/19/2017 07:43:32 am

I think you are wise to get a second opinion from a myeloma specialist. I assume the prior treatment was VRd, which also included dexamethasone. Two great specialists in the general area are Saad Usmani, MD - Levine Cancer Institute, Charlotte, NC., and Cristina Gasparetto, MD - Duke University Medical Center, Durham, NC. Good luck and God Bless you families myeloma journey. Gary [email protected]

Chris

4/19/2017 08:55:25 am

My Mom was diagnosed with MM in March of this year. She takes chemo (Velcade) subcutaneously 1x/week. She has 10-12 lesions in her spine, both hip joints, rib, left clavicle and right femur. Ortho doc just told us today she will probably never walk again because hip replacements would be too hard on her. She is diabetic and has congestive heart. Dr. Wildes said she is not a candidate for transplant because of all her health issues. She is seeing Dr. Tanya Wildes at Barnes Hospital in St. Louis. She was in the hospital for 2 weeks to fix the femur & hypercalcemia, went to rehab for 2 weeks and due to pain has been at Barnes for the last 3 1/2 weeks. They are FINALLY getting her pain level to a 5 now. Her pain last week was HORRIFIC! I can't imagine she can travel anywhere, but I want her to get the best care and have the best chance for survival. She is on Medicare and a supplement. Any thoughts of who else we can see, or is Dr. Wildes the best in our area. We have only seen her once or twice in the last 3 1/2 weeks at the hospital. She sends a nurse or resident to see mom once a week. Please help asap! Mom is beginning to give up because she isn't improving any.

Gary Petersen link

5/12/2017 03:11:41 pm

Chris, Dr. Ravi Vij is a world renowned myeloma specialist and practices at Barnes as well. You may want to talk with him for a second opinion at Barnes.

Bobbie Moore-Perry

7/17/2017 02:47:24 pm

Hi Gary, my brother in law was diagnosed this week in Cincinnati. His doctor sent him to Dr. Wang which he saw today. He has several lesions and they did a bone marrow biopsy today. They also discovered a tumor on his spine that is the most critical first and they want to start radiation. This is VERY new to us. I think he should see a specialist in MM, not just any oncology/hematology specialist. You listed Elias Anaissie at University of Cincinnati. He is still in shock from this diagnosis which was found because he broke a rib coughing. Do you have any info on Dr. Wang and Dr. Anaissie that would be helpful to make this decision? There is also Craig Hoffmeister at the James at The Ohio University that would not be too far. Thank you for all of your help and research that you provide to all of us!

Gary Petersen link

7/25/2017 08:59:42 am

So sorry to hear about your brother in laws myeloma. Often the bone damage can be repaired or even reversed under the supervision of a myeloma expert. I looked for a hemotologist/oncologist in Cincinnati for Dr. Wang and there were a number of Wang's but none that would be considered a myeloma specialist as far as I could see. I will blind cc Dr. Hoffmeister and Dr. Anaissie both myeloma specialists which you would find to be excellent. Dr. Hoffmeister was one of the very first to provide his survival data and is working on CAR-T cell therapy as well and he would be an excellent choice. Dr. Anaissie worked at UAMS under the leadership of Dr. Bart Barlogie(A giant in myeloma treatment) and UAMS had consistently had superior myeloma survival and I would believe Dr. Anaissie's would be another excellent choice. I used to say it was a necessity to get a myeloma specialist on you team, but now with such a break neck speed of treatment development and treatment anybody who did not get a MYELOMA SPECIALIST on their them would be foolish. I as a myeloma advocate find it almost impossible to keep up with the new developments. You are being a great advocate for your brother in law. Good luck and God Bless your families myeloma journey/Gary Petersen

Peggy

8/9/2017 04:42:22 pm

We live in Wichita Kansas and are going to Central Care Cancer Center. Dr. Elshami Elamin who is listed at there practice as a Hematology / Oncology Dr. My husband was diagnosed 6/9/17 and is on RVD 3rd round. Our GP (whom I have the utmost respect for) sent us to him. I just wonder if you know anything on Dr. Elamin. I don't think we have any MM places in Wichita. do you know of any.

Gary Petersen link

8/10/2017 10:27:01 am

Peggy if you put Dr. Elamin into Google Search followed by multiple myeloma you will note very few results and may do not have myeloma in the result. In addition, in his profile at Central Care he does not list myeloma as a topic of treatment. If you do the same for Dr. Siddhartha Ganguly,University of Kansas Cancer Center there are over 6000 results many including myeloma. With KU only 3 hours away I would get a second opinion from Dr. Ganguly and have him direct your husbands care which much of which could be done locally in Wichita. I am sure Dr. Elamin in a fine doctor, but not a myeloma specialist. If I were your husband I would be on my way to KC ASAP! Good luck and may God Bless your families myeloma journey!/Gary

Sherrill

11/13/2017 07:57:13 pm

Hi - I found this website through a Facebook Group for MGUS. I was diagnosed in 2011 and my M-Spike has varied from 0.5 to 1.1, and is currently about 0.8. Initially I saw a local Oncologist and he said he did not do Bone Marrow Biopsies until the M-Spike drifted closer to Smoldering. In 2011 and 2 months ago, I did the 24 hour urine test and it was negative. I stopped seeing him in 2013 (he was mean), and just have quarterly lab work done by my Family Doctor. I have had no symptoms of anything until 6 months ago when I started getting some neuropathy in my legs and feet - the Neurologist just said idiopathic neuropathy. I was wondering if I should go see a Myeloma Specialist just to check on things or just continue on as is. I live near Dallas, TX and don't really see any top specialists in my area. The closest would probably be Arkansas, but I know they are very aggressive, and I don't know if that's way more than I need, or wise to go meet with someone. I just wanted to ask your opinion on what you would do in my case. Thanks so much for reading my post. Also, I am 66.

Gary Petersen link

11/14/2017 12:20:25 pm

Sherrill, Dr. Larry Anderson of the UT Southwestern Medical Center is listed as a myeloma specialist on the Myeloma Crowd site. Also Dr. Orlowski at MD Anderson is outstanding, as is Dr Van Rhee at Arkansas. If you are smoldering and low risk smoldering most people would observe, but if high risk smoldering some locations have clinical trials which show that early treatment will improve survival in these patients. Dr. Irene Ghobrial of Dana Farber in Boston has a program where you mail in blood and urine samples and they will follow you as part of there outstanding PCROUD program at the link: http://www.dana-farber.org/research/departments-centers-and-labs/departments-and-centers/center. If I was smoldering, I would be part of this program, as are many of the smoldering patients are currently doing. Good luck and God Bless your myeloma journey/Gary

Kathryn Brandy

12/5/2017 04:51:11 am

We live in Pittsburgh, Pa and my husband was just diagnosed with MM, it is very early in the diagnostic stage and we are still awaiting some test results. He is trying to decide where to seek treatment. We have seen Dr Agha at UPMC and Dr Valent at Cleveland Clinic. Can you give us some direction? Thank you.

Michelle

12/17/2017 07:46:26 am

I’m currently in a maintenance treatment for my prior endometrial cancer at the Cleveland Clinic in Ohio (I live 35 miles south of Cleveland). I’ve had mgus for about 13 years and was approaching my five year, cancer-free status; but, just this week was diagnosed with smoldering myeloma. The doctor who made my diagnosis is Alex Mejia Garcia at the Cleveland Clinic. I haven’t found any indication that he is a myeloma specialist. I want to find an excellent myeloma specialist with loads of smoldering myeloma experience and success. Is there anyone at the Cleveland Clinic or elsewhere in Ohio you can suggest? Or, where would you suggest I go to give myself the best possible chance of surviving and thriving for the longest time possible?Thank you so much for your consideration.

Linda McManus

1/10/2018 05:30:43 pm

My husband has Multiple Myeloma. He was sent to Dr Shebli Atrash at Levine, in Charlotte,N.C..but there's no info or rating.He started chemo shots and pills for eight cycles. Now getting ready for stem cell transplant. We need to make sure we have the right doctor. Please advise asap. We start Monday on testing for transplant.

Gary Petersen link

1/12/2018 07:15:17 am

Dr. Saad Usmani is the head of the program at Levine, and he has set up a wonderful team. Many come from UAMS like Dr. Usmani, and that includes Dr. ShebI Atrash. You are in the right place for excellent care and I would ask that Dr. Usmani review your case for his agreement not the corse of action. Good Luck and God Bless your families myeloma journey/Gary Petersen

Peter

4/25/2018 11:50:22 am

Hello everyone. My name is Peter. I’m looking for the best specjalist in MM. My brother was diagnosed MM. I’m from Poland but seeking for opportunieties. If some of you can reccomend a grest specialist in MM I’ll be more than gratefull

Ira

6/3/2018 04:14:06 pm

Hi- My father was recently diagnosed with MM and is also a kidney transplanted patient. We are from Albania and the treatment of MM in our country is almost non-existent. Please, suggest us some MM specialists in Europe. Thank you

Gary Petersen link

6/7/2018 09:54:00 am

Ira some of my favorites are listed on my site 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

Close to you is
Meletios Dimopoulos University of Athens, School of Medicine Greece
Other great doctors in Europe include some of my favorites
Jesús San Miguel Clínica Universidad de Navarra-CIMA-IDISNA Spain
Philippe Moreau University Hospital France
Pieter Sonneveld Erasmus Medical Center Netherlands
Maria-victoria Mateos University of Salamanca Spain

Good luck and may God Bless your families myeloma journey/ Gary Petersen

Amy

7/30/2018 04:21:24 pm

My mother has been recently diagnosed with MM. We are in the very beginning stages of this- we don't even know staging as of yet but want to get started with a Dr and team ASAP. Any suggestions for specialtists in the Mpls/St. Paul area?

Gary Petersen link

8/5/2018 10:20:26 am

Amy, if you are in Minneapolis then you happen to be right next to a one of the best centers in the world Mayo Clinic Rochester. There are many there. however two of the very best are Dr.Vincent Rajkumar and Dr. Shaji Kumar. I will blind cc one of them for you and if they can be of help they will contact you. Good luck and may God Bless your families Myeloma Journey/Gary

Janet

8/18/2018 08:58:45 pm

I was diagnosed with non IgM MGUS in 2014 at the age of 56..I am followed twice a year and have had initial bone scans with no identified lesions .I am however concerned because I was showing protein in my urine and have noted an increase in my M spike protein .
I know it is in my best interest to be proactive although I know with MGUS protocol the practice is watchful weighting ...I just feel like with the increased protein perhaps I should seek a second opinion,

Karmen Hescox

8/22/2018 09:30:03 am

Thanks for your advise on doctors. I looked on your website to get a doctor for my Mom in San Diego but didn't find any. Do you have any suggestions?

Gary R. Petersen link

8/23/2018 06:04:08 pm

At the bottom of the my listing page are several other listing. Please look at the one from Myeloma Crowd, they list UCSD and another in SD as well. Good Luck and may God Bless your families myeloma journey/Gary

Geo Tre link

9/1/2018 01:28:01 am

My mother got diagnosed with smoldering myeloma after a bone marrow biopsy. The hematologist/oncologist at Moore’s cancer La Jolla Suggested we go to a MM Specialists. I’m planning on taking her to the City of Hope. There I’m planning to see Dr. Amrita Krishnan. She is the director of the Judy and Bernard Briskin center for MM. Originally I wanted her to see Dr. Durie but isn’t taking new patients. Dr. Robert Vescio was another consideration. I am leaning towards city of Hope because this is all they do is research. I’ve read so much that everything is becoming confusing to me. My mother is 74 and is relying on me to find the best doctor for her. What is your opinion of The City of Hope And the doctor I’m planning to see you there?

Sue

11/4/2018 01:40:11 am

I was wondering why Cancer treatment centers of America isnt mention for multiple myeloma specialists.(or did i just miss it?) My husband has just been diagnosed with multiple myeloma there and has no symptoms as of yet . He has not started any treatment yet and is going to Sloan Kettering for a second opinion. Your thoughts please.

Maria

11/22/2018 09:41:55 pm

Hi Gary, I can't tell you how helpful your website has been. My husband and I are in the very earliest stages of myeloma - we have a follow up appointment with an hematologist-oncologist this Thursday, 11/29, at which time we hope to learn of his actual diagnosis, but during this time of great anxiety, the enormous amount of information and resources that you have compiled have given me much hope. My husband is asymptomatic, but his PCP referred him to a Hemoc doctor after routine bloodwork and a subsequent 24 hour urine collection test. The Hemoc doctor told us he is looking at MM and has done more blood work, a skeletal survey, bone marrow biopsy and PET scan. I would like to make an appointment for a second opinion immediately after our appointment on Thursday. We live in Syracuse NY, and I would like to see Dr Barlogie, but my husband is more in favor of Roswell (because it is closer and because the father of a co-worker has done very well in the treatment of AML ( including a stem cell transplant)). I know you listed Roswell for their work with auto transplants, but can you comment on the rest of their work - identifying high risk myeloma and treatment philosophies? Also, when you "have a myeloma expert on your team," what does this mean? Is it common for a local hematologist-oncologist to carryout some portions of a treatment plan that is designed by "our expert," or are we likely to have to travel to New York or Buffalo for monitoring and other appointments on a regular basis? Thank you for your consideration.

Gary Petersen link

11/24/2018 08:49:57 pm

Maria, glad to be of assistance. Dr. McCarthy of Roswell is excellent, and Dr. Barlogie is outstanding. You can not go wrong with either of these exceptional specialists. To have a myeloma special on your team can include getting a treatment plan from the specialist and most of the follow up with your local oncologist. However, if you getting a stem cell transplant you need to go a hospital with a lot of experience. A member of the CIMBCR transplant organization would be a good choice. Good luck and may God Bless your families myeloma journey/Gary

R. Khan

11/25/2018 02:39:11 pm

Hello. My dad was just diagnosed with multiple myeloma about 2 weeks ago. He has Kaiser. He is getting a bone marrow biopsy on Tuesday and then 2-3 weeks after he will be getting chemotherapy at Kaiser then he will be sent to Stanford for something (I guess the bone marrow or stem cell transplant). The doctor said he is in very early stage (not even stage 1, thank God). He is healthy thank God (not diabetic, no heart problems, no kidney issues). I hate Kaiser. I want him to get his full treatment at Stanford. His doctor friend looked at his stuff and said since he is in a clinical trial, it's standard..meaning no one can change it. It's the FDA that dictates what to give, etc.
His kaiser hematology oncologist is Dr Naresh Patel. My said he felt very comfortable with him.

We are all still in disbelief and scared out if our minds. I hope my daddy is okay.

Gary Petersen link

11/25/2018 05:42:38 pm

R. Khan, I did a google search of Dr. Naresh Patel multiple myeloma and found very little. I do not know of all the specialists but have never come across Dr. Patel. Dr. Michaela Liedke seems to be the Myeloma go to doctor at Stanford. Dr. Wolff is a multiple myeloma specialist at UCSF I would get a consult with one of these doctors to see what type of treatment plan they would provide. If it differs from Dr. Patel's plan I would recommend Dr. Patel follow the myeloma specialist plan. Good luck and God Bless your families myeloma journey/Gary

Janice Riley

11/25/2018 06:21:39 pm

My husband's is 71 yrs. old and a Vietnam veteran, he goes to VA Medical Center for all his medical needs. He was diagnosed with Smoldering Myeloma in August 2018. He has high blood pressure, stage 2 renal failure, his protein level is up in his urine as well as in his blood. Recently he has been experiencing numbness in his feet... he can only walk about 50 ft until his feet get numb and he has to stop and sit down. He is aslo experiencing servere fatigue and weakness. VA take the wait and see approach which we don't agree with but don't know where to go or who to see for a second opinion. My husband was always very active and a go getter ..but now I can see a difference in him. We have been together for 48 years...We live in Milwaukee Wisconsin. Any suggestions or referral is greatly appreciated.
Thank you,
Janice Riley

Gary Petersen link

1/7/2019 08:05:38 am

You have two excellent myeloma specialists in the Milwaukee area. You are right to get a myeloma specialists second opinion. You are your husbands best Advocate!

Parameswaran Hari, MD- Medical College of Wisconsin, Milwaukee, Wisconsin
Michael Alan Thompson, MD - Aurora Health Care, Milwaukee WI

Good luck and may God Bless your families myeloma journey/Gary

Lawrence

12/27/2018 03:00:52 pm

Are there any doctors who specialize in treating high risk MM?

Mary

1/23/2019 07:11:59 am

Hello Gary,
My mom is waiting for the results of her BMB and PET scan. However, her hematologist/oncologist believes she has multiple myeloma. She will probably need to start treatment as soon as a diagnosis is confirmed. We live in the New York City area. Can you tell me which is the best place to go to? Which doctor would you recommend. She seems to be in good health otherwise. Thank you

Tammy Coughlin

2/2/2019 03:56:58 am

My stepdad broke his sternum in November. The ER doctor suspected MM and urged him to get to a pulmonologist immediately. Instead, he went to a thoracic doctor who agreed with the MM speculation and told him to skip the pulmonologist and go directly to an oncologist. My mother took him to her oncologist at Georgia Cancer Specialists. They killed almost 2 months getting him to an oncologist, getting a biopsy, and a PET scan. They are currently seeing Jennifer Jones. I am very concerned because she also believes he has leukemia and in fact told him prior to the biopsy that she thought he had lymphoma or leukemia based on his blood work even though the symptoms presented like MM. He ended up in the hospital last weekend with a blood clot and extremely high creatinine levels. They got the blood clot dissolved as well as the kidneys functioning properly. I still feel that they need to go to Emory in Atlanta, but they "have been told" that GCS is #1 at treating MM. So far, I'm not impressed. Any thoughts on GCS?

Gary Petersen link

2/2/2019 01:10:13 pm

Tammy, I think your have an excellent grasp of the situation. A two month wait for a bone marrow biopsy is outrageous. I have conducted some research into GSC and if you google the doctor or the center with the addition of multiple myeloma you find little to support their claim of being #1. Emory on the other hand under the leadership of Dr. Lonial is not only the best center in Georgia for mywlom, but one of the best in the world. I would get a second opinion at Emory NOW! Do not DELAY!

Charles Hanson Jr

3/21/2019 01:59:47 pm

My Fiance' was diagnosed late last fall with M/M.
She's in the 2nd month of treatment with chemo infusions 2xweek plus revlimid daily, both for three weeks, and one week off. One month left on this process. Going to see Dr. Jakubowiak next week at U/C. any comments on ths Dr. ? Thanks

Gary Petersen link

3/24/2019 08:15:04 am

Dr. Jakuboviac is an excellent doctor, with his work with Kypolis and SCT with an ORR and PFS second to non. You are being a excellent advocate for your Fiancé.

Ira Greenberg

7/13/2019 05:26:53 pm

Gary, Thank you for this incredible resource! My father is 78, recently diagnosed with MM. He is suffering with severe back and numerous other symptoms. Can you please recommend Dr's in NJ. Thank you again.

Bee

7/25/2019 10:08:45 pm

Pls any good specialist in Arlington TX. My dad 71 currently has Multiple Myeloma. Been in and out of Emergency room in Arlington TX. He had blood transfusion, right after, suffered delirium which he never had before being admitted. Though back to normal now, he is experiencing other issues such as his heart rate going up and down when he eats, and constantly gasping for air. They believe it might be his lungs and blood clot. Struggles with walking, and currently going through physiotherapy. A bit worried and would like a second opinion before it's too late.

Gary Petersen link

8/5/2019 10:35:54 am

Bee, sorry for the delay. You can find a listing of myeloma specialists at the link: http://myelomasurvival.com/myeloma-specialists-listing.html
Close to Arlington you have Larry Anderson Jr., M.D. - UT Southwestern Medical Center, Dallas Texas, who has an excellent reputation. Best Regards/Gary

Bee

8/6/2019 07:05:28 pm

Thank you so much. He is currently at UT Southwestern with Dr Larry. Thanks for reaffirming that we made the right choice/move by having him transferred. You are saving lives with your blog. Thanks again.

Bessie

9/1/2019 12:56:12 pm

Guidance is needed. I went to a thoracic surgeon at NY Presbyterian for a biopsy at the recommendation of Rheumatologist I brought reports of blood work which showed M spike and an MRI which showed 6.5 cm mass bursting through manubrium and doctor scheduled surgery to remove mass which I agreed to since he made it appear to be dire and recovery would only take 3 weeks. Pathology determined Multiple myeloma and BMB and FISH test confirmed. It has been 2.5 years and I am still in pain from the massive chest wall resection and reconstruction and wonder if radiation would have been a better course of treatment or at the least run more tests to determine type of mass prior to surgery. I am currently with a wonderful MM specialist at Mount Sinai and hope to return to a healthier place.

Lori

12/18/2019 07:27:22 am

I was diagnosed with smoldering myeloma yesterday by my hematologist/ oncologist Dr. David C. Molthrop Jr. at Florida Cancer Specialist. I do not see him on your list. I like him fine, but it does not look like he specializes in myeloma. I went through your list and found a Dr. in Tampa at Moffitt cancer center. Dr. Rachid C Baz. It is two hours from where I live. I'm wondering if I should make the drive and go see him since he does specialize in it. What do you think? Im just so freaked out about this and trying to wrap my head around it.
Thank you

Bee

12/21/2019 10:46:32 pm

Sorry to hear about your diagnosis Lori. Though I’m not a medical expert, or experienced like Gary . I’ll tell you the 2 hrs drive will be worth it in the end. It saved my Dad’s life. A specialist can also tell if there are other conditions interfering with the myeloma. For my dad, he also had a heart condition which wasn’t originally picked up by his doctor.

Jen Harper

1/1/2020 09:51:00 pm

Just diagnosed, still awaiting tests and want to find an excellent Doctor asap. I'm young, 40 and want a physician with the highest cure rate possible. I see you recommended two physicians at Mayo in Rochester to another member of this group. Out of those 2 Doctors, which one would you want to see if it was you or your family member, Dr Kumar or Rajkumar?

Also, if I cannot get in to see that Doctor, could you recommend another Doctor out of state with the best cure/survival rate?

Thank you so much. This means more than you know.

Gary Petersen

1/4/2020 09:57:33 am

Jen, both are excellent. You would be well served by either.

Kay

2/3/2020 02:57:17 pm

Dear Gary,

Please forgive the terseness of my earlier message. Sometimes I’m not thinking too clearly. I keep doing things not the way I would normally do them. I am grateful to you for your devotion to this cause. You are helping so many people.

I should have added that I am 60 years old and expect to do ASCT after my initial chemo course. I’m not sure how soon that usually happens after chemo ends. But my chemo will be done mid-April, so I hope to figure out where to go for ASCT as soon as possible.

Any advice you can offer would be appreciated.

Kay

Gary Petersen link

2/5/2020 07:48:56 am

Kay, look at the myeloma specialist listing and select one near you. Then call them and ask them how many stem cell transplants they do each year for myeloma. Any one over 50 per year would be a good choice. Best Regards/Gary

Sean

8/31/2020 09:36:22 pm

Hello Mr. Petersen

First of all, I thank you and you're crew very much for operating this website. It helped me a lot even though I'm a Korean who's not good at English.

My father was diagnosed with Multiple Myeloma stage 1 last week. I find it grateful becasue stage 1 is still early.

I saw the great 8 MM specialists on your website and tried to research on them in google. I found some of their clinical trials but couldn't be sure what are they been up to recently since the great 8 specialists article was up on year 2014, so I needed to know they're still on work in their best condition.

Now, we're thinking of moving to US to get treatment for my father. Would you recommend me some multiple myeloma specialists in US?

Sorry for the poor English writing and hope you understand.

Best Regards.

Gary Petersen link

9/2/2020 07:21:51 pm

Sean on my site is an excellent listing of specialists at the link: myelomasurvival.com . The great 8 are still good for the USA except for Dr. Barlogie who retired however I would add my doctor Dr. Ola Landgren at MSKCC as well as Dr. Saad Usmani, Dr Lonial, Dr. Raji Kumar, Dr. Ken Andersen, and Dr. Fritz Van Rhee. The new Tremendous 12!

Roberta

9/15/2020 07:43:20 pm

Gary, My hubby has recurring MM. We were referred to. Dr. Sikander Ailawadhi, MD at Mayo in Jacksonville. Then someone else said the best place to go is University of Arkansas and see Dr. Maurizio Zangari, MD. I would appreciate any thoughts you have. My hubby has gain of 1Q21 making it rare. Any thought would help.

Gary Petersen link

9/19/2020 04:17:26 pm

Roberta, I sent you an email but it came back as undeliverable. I had blind cc'd Dr. VanRhee and Dr. Ailawadi and both replied to you.

Dr. VanRhee stated, "Many Of our patients have gain of 1q21 and do extremely well. We will be happy to see the patient."

Dr. Ailawadhi stated "I am happy to see the patient as well, if needed. 1q 21 is seen in about 35-40% of myeloma patients and by itself it may not have that poor prognosis. Sometimes it is associated with other high risk mutations which can change the prognosis a bit but still, as Dr. Van Rhee mentioned, typically patients do quite well. We should have a phase 1 trial soon specifically focusing on 1q 21 patients.'

Looks like it is not as gloomy as your doctor had let you to believe. Good luck and God Bless your families myeloma journey/Garu

Gary Petersen link

9/17/2020 06:58:04 am

At UAMS my first choice is Dr. Fritz VanRhee, and Dr. Aliawadhi is amazing. I do not know which would be better for the treatment of the gain of 1Q21. You may want to consult with both to find out yourself. Good luck and may God Bless your families myeloma journey. Gary

Paula

9/18/2020 04:14:50 am

I am seeking a specialist also for recently diagnosed smouldering multiple myeloma. I live in San Antonio, Texas. IWhat facility would be better in your opinion. UT Health San Antonio MD Anderson Cancer Center ( newly affiliated with MD Anderson since 2017) or MD Anderson in Houston, TX. Any specialists names specifically would be appreciated also. Thank you😊

Gary Petersen link

9/19/2020 04:40:20 pm

Paula, One of my favorites is Dr. Orlowski of MD Anderson Houston, and he is one of my original GREAT EIGHT and still is. Good luck and you can not go wrong with Dr. O.

Chris

9/30/2020 06:54:30 pm

Hi,
I live near Froedert Hospital but Dr. Hari is not taking new patients. What would you suggest.
Thanks

Gary Petersen link

10/3/2020 04:25:54 pm

Chris, I will blind cc Dr. Hari, and Dr. Thomson to see if they have recommendations. However, there are some other great specialists near Milwaukee. Go to the link: http://myelomasurvival.com/myeloma-specialists-listing.html

Michael Alan Thompson, MD - Aurora Health Care, Milwaukee WI
Andrzej Jakubowiak, MD - University of Chicago, Chicago, Illinois
Natalie Callander, MD - University of Wisconsin-Madison Hospital, Madison, WI

Best Regards/Gary

Amir

12/5/2020 11:47:53 pm

Hi Gary,

Thank you for all your contributions to Myeloma world.

My mother is a MM patient at cedarsinai hospital under care of Doctor Vescio.
She is currently under Kyprolis treatment.

I would like to obtain second opinion for her from one of the specialists you mentioned here, however, I don't want to risk traveling given the current Covid-19 circumstances.

I was wondering if you could help us to connect with one of the myeloma specialist for remote consultation. Thanks!

Deb

12/26/2020 07:01:21 pm

Hi Gary, I am 5 years in with smoldering myeloma and was a patient of Doctor Barlogie. Trying to find someone close to Ohio. Hard to find someone as great as him. Any help you can give me would be wonderful. Thank you

Gloria

4/29/2021 10:20:49 am

Are you aware of any Doctors in the Kansas City area that specialize in MM?

Lorraine

5/6/2021 03:32:46 pm

My friend has new dx of smoldering multiple myeloma. He is 71 years old with a pacemaker, but eats healthy and is not overweight, etc. He has had vision problems for years now. He is seeking a second opinion for his new diagnosis. He has no help where he resides in Silver Spring Maryland. If I still lived in Md. I would drive him to Johns Hopkins hospital where I was born. Do you know of any top physicians for this illness in Silver Spring or Washington DC? Thank you for any assistance!

Linda Gottlieb

8/18/2021 07:44:39 pm

I am in an early stage of myeloma. Considering Johns Hopkins, Cleveland Clinic, Dana Farber and Mayo. I live in the Dc area. My hesitation about DF and Mayo is that I would have to fly Ann’s am nervous about COVID. What do you recommend? I known someone in remission now who is treated at DF and says he would intro me to his doctors.

Susan L Minute

9/14/2021 11:59:51 am

We are in the Rochester, NY area. I am wondering who you would recommend close to us. My husband was just diagnosed and is supposed to be scheduled for surgery. They are currently cancelling surgeries due to staff walk outs concerning the vaccine, so we are not sure he will get in and it was supposed to be more urgent. We may need to find another hospital, and we also may want a second opinion from someone from your top 12 list. But we wondered if you had recommendations in this area. Thank you.

Gary Petersen link

10/21/2021 06:37:58 pm

You can find a link to myeloma specialist at: http://myelomasurvival.com/myeloma-specialists-listing.html
Philip McCarthy Jr. M.D. - Roswell Park Cancer Institute, Buffalo, NY is an outstanding myeloma specialist.

Mary Briggle

5/16/2022 03:24:49 pm

I have just been diagnosed with Multiple Myeloma. I live in rural East Texas. We have a local oncology clinic, no specialist. Can you recommend someone close?

Patty Figiel

6/7/2022 08:05:23 pm

Hi Gary, Thanks for all this great information. I am seeing my community doctor for treatment and now in my 8th cycle RVD with Dara. I have opted not to do the transplant mostly because I am confused by all the different opinions out there. My Moffitt myeloma specialist is Dr. Brayer and he recommends the transplant and my community doctor Dr. Patel had not recommended transplant until today after I believe he might have had a conversation with Dr. Brayer and now has changed his mind. I find that odd and I would like to get a third opinion from Dr. Orloski at MD Anderson and/or Dr. Ola Langren at Sylvester. I have followed both of these doctors on Healthtree Myeloma Crowd programs. Do you have any track records on Dr. Brayer and Moffitt for transplant success and do you think it is a good idea to get different opinions. I live an hour and a half from Moffitt and they only do outpatient ASCT. My insurance would pay for full hospital stay but not for local housing since we live less than 50 miles. My treatment has been very successful so far without any bothersome side effect thankfully and my M spike is not at .12 but I am more confused than ever about this whole transplant thing. Any info. you can share would be greatly appreciated.

Sabrina

3/24/2024 09:35:38 am

I’m looking for a specialist in the MD, DC, WV for my mother. She’s 60, was diagnosed about 7 years and has already done a stem cell transplant and has been doing various forms of chemo since, waiting for a car-t transplant. I would like her to see a specialist but not sure the best in the area. Many mixed reviews online. Thanks!

Sharon Kordik

9/10/2024 01:30:43 pm

What specialist would you recommend in the Chicagoland area. I have seen Dr. Mehta at Northwestern where I had a SCT in April (no change in M-spike yet) and also consulted with Dr Jakubowiak at University of Chicago. I have also heard that his younger college, Dr. Ben Derman is very good. I had a VGPR from induction but have not been able to get into remission. I have IGG Kappa, 1q+, no symptoms, 60 years old, extremely active.

Gary Petersen link

9/11/2024 08:07:55 pm

Sharon, Looks like you have done your research, Both doctors are considered skilled myeloma specialists. You now have two treatmnent plans and it is up to you to chose the one you feel most. confortable with. Good luck and may God Bless your myeloma joruney.

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