Who are the GREAT EIGHT of Multiple Myeloma Specialists?

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BY GARY PETERSEN

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 the 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 who have excellent outcomes would be a great option.

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.

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About Author

Gary Petersen

Gary is a myeloma survivor and patient advocate. His work centers around helping patients live longer by helping them to find facilities who are beating the average survival statistics. You can find Gary's site at www.myelomasurvival.com and follow him on Twitter at @grpetersen1

37 Comments

  1. Kristi Mickam on

    My mother passed two years ago from amyloidosis and multiple myeloma at age 79. Three years prior my mother and I (55 at the time) were both diagnosed with MGUS living in different States. Am I at greater risk of developing multiple myeloma due to hereditary factors?My mother was diagnosed and followed by Doctor’s at Mayo Clinic in Rochester MN.

    • Jenny A

      Kristi, in the interview Dr. Rajkumar mentions that 1-2% of the US population has MGUS and maybe more because it is rarely detected. I would email your mom’s previous Mayo doctors because they can answer that better for you than we can. Myeloma is not known to be genetic but it can be in rare cases.

  2. Very helpful article Gary!
    Now how about some statistics on best hospital for a successful allo transplant.

  3. Claudia Tyrrell on

    I have been a patient of Dr. Barlogie for nine years and I would have to agree with your summation about the character of this specialist for sure. He has given so much of his life to this disease and to his patients. I am about to go down to Little Rock from Maryland because I need treatment and I know UAMS is the best for me. When you are a high risk patient as I am you go to the doctor who has the knowledge and research available to treat you. I will be in Arkansas for at least four to six weeks which is hard to do but necessary.Thank you for this recognition for these special doctors.

    • Gary Petersen

      Claudia, thank you for your comment, I also agree that the high risk patient has treatment issues which only a few myeloma specialist are equipped to deal with. Dr. Barlogie is one of those very select few with high risk expertise. Thank you for your kind words. Gary

  4. I AM A SURVIVOR OF M M, MELANOMA, BLADDER CANCER AND STEROID INDUCED DIABETES FOR 24 + YEARS AND I HAVE HELPED OTHER PATIENTS AND RECOMMENDED DR. BARLOGIE MANY TIMES . I wish all of you that can Hear me , for you to get well, Believe you Can” Beat the Cancer “, and go forward with that Attitude ! and Live Life Great Every Day !

    • Gary Petersen

      Walter, you sound like a real fighter and a patient advocate as well. Thank you for the story of success for 24 years. Great thoughts about attitute, and it obviously is working for you. The Best/Gary

  5. Dear Sir,
    My mother aged 70 has been diagnosed with Multiple myeloma malignancy. Presently at 55% . Her Chemo has started in India with Dexona and Veltpid by pfizer.
    She is a diabetic for last 15 years.. medication is oral for diabetes control.
    xan u please recommend good myeloma specialists or hospitals in India..
    thanks
    Rajesh Gaur

  6. Dear Gary and Jenny
    Thank you so much for your efforts to help multiple myeloma (MM) patients. Your website is very very helpful. I know I should ask Drs to answer my question, but cant help to ask you first. Last Friday (March 25, 2016) my close friend living in Holland was just diagnosed with MM on his neck. He had an operation that removed only part of the tumor, which was wrapped around one of the cerebral arteries and was very firmly lodged. He would need to start chemo soon once the neck is sufficiently healed.
    If they plan to come for treatment of MM in the US, would it make sense to delay the chemo until he gets here in case his weakened immune system from chemo preventing him from traveling? Please kindly advise. Thank you very much

    • Jenny A

      Limin, Really, a top, top specialist in the Netherlands is Dr. Pieter Sonneveld in Rotterdam. He is a global myeloma leader and leads the HOVON group, so I would first suggest visiting with him. If you need to contact him, email me at info@crowdcare.org and I’ll send you his info. I would start there for sure.

  7. My 79 year old husband was diagnosed with stage 3 multiple myeloma and will have completed 6 chemo treatments and 12 radiation at the end of this week 4/29/16. He has a burning pain in his right thigh which he will address to the oncologist tomorrow. He is very tired and weak; can’t stand for very long . We want to get another opinion . We live in Nevada. I found s lust of the Great Eight . Do any Drs support alternative plant based nutrients/therapy.

  8. Dear Gary, my brother has been diagnosed with multi Myloma. I don’t know what stage he is in but he has one more round of chemo. His tending oncologist wants him to start in the not so distant future to have a bone marrow transplant even though he is now in remission! Please enlighten me as to the questions we may have missed involving what my family feels “is putting the cart before the horse.”

    • Gary Petersen

      Susan, what your doctor is suggesting is a standard practice. As my myeloma specialist has informed me even though they say you are in CR(complete response), you still have millions of myeloma cells in your body, and as a result transplant, consolidation, and maintenance is a practice designed to try to cut the last millions down to a more controllable level. A test call MRD or minimum residual disease is now the most sensitive test in use and I have had three. Two were negative and the last was not, so it is not easy to eliminate. As I always say a myeloma specialist is a MUST HAVE as your main doctor or as a second opinion which will provide a plan to your local oncologist to follow. The other very important thing to do is to find out if your brother is high or low risk. If low risk disease he is in the money, but if high risk a clinical trial or allo transplant may be his best best, however a myeloma specialist is the only person to best assess what is required. A great roadmap is provided by Mayo Clinic called the mSmart program which outlines treatments recommendations based on the risk signature of a person myeloma. You can find this recently revised outline at the link: https://nebula.wsimg.com/e1520dd2009dae7c8ea5ca513775b8fa?AccessKeyId=A0994494BBBCBE4A0363&disposition=0&alloworigin=1
      Good Luck and God Bless your families myeloma journey/Gary Petersen

  9. Hi Gary and jenny ,
    I am from india and my mother has just been diagnosed with multiple myeloma….she was asyptomatic , we incidently found an isolated rib lytic lesion …….biosy turned out to be myeloma and the iliac creast biopsy and electrophoresis confirmed multiple myeloma………..otherwise she has no renal problems , pet scan is clear except for the lesion in the rib……now i want to take her to usa for myeloma expert opinion and i am confused whether to go to dr rajkumar or dr Barlogie…..please help me decide……..thanks

    • Gary Petersen

      Udai, There are many exceptional myeloma specialists, and Dr. Rajkumar and Dr. Barlogie are two of the very best. You can not go wrong with either doctor, however my doctor was Dr. Barlogie, and I have witnessed his magic personally. So the tie for me always goes to the doctor who saved my life.

  10. Christine Morris on

    Hi, 28 i first dignoised Plasmacyctoma. Fracture my are opening bottle, did surgery left arm. Removed it and placed metal rod in June. So everything good till August. Server back pain, arm and neck pain. Went to lot doctors nothing. Till went er which how first diagnosed. Second time ask xray well found out in other arm, neck and 48 percent vertbra. Mine rare bc all this time after surgery blood work normal, biopsy normal and urine.only way dectect pet scan. How can blood cancer and shows no proteins or abnormal blood count? Told cant do clinical trails due rare and cant be dected blood. I wont answers, im 28. I was told 40 yeArs too young. I healthy, great blood pressure nothing else wrong. Did another biopsy bc secound myeloma spealist skeptical. Started first does chemo due fell kitchen broke other arm. Aftaid back next, cant take more surgery with one year old and 6 and 8. Feel like circus due my age. Do have other state get answer?

    • Gary Petersen

      Christine, what it sound like is that you have a nonsecretory type of myeloma. Myeloma is rare and requires a treatment plan from a myeloma specialsit, and yours if nonsecretory is just 15% of all myeloma so a specialist so someone who see a lot of myeloma patients is even more important. Often your myeloma can only be identified by MRI and PET scans. Your IP address says you are near Wichita. If so UAMS is excellent and Dr. Fritz Van Rhee is exceptional, and they see a high volume of patients, also Siddhartha Ganguly, MD – University of Kansas Medical Center, Kansas City, KS is close and an excellent choice. You can see a number of specialists at the link: http://www.myelomasurvival.com/myeloma-specialists-listing.html Christine you are so young and you deserve the best chance to live a long life, and I hope and pray you find the specialist which will make this happen for you. Gary Petersen editor@myelomasurvival.com

  11. Hi Sir,

    My father has taken 4 cycles chemotherapy and taken the final test in last month but in the report shown 4 % palsma cells. could you please guide the best treatment.

    Thanks & Regards
    Surendra p

    • Gary Petersen

      Surendra, So sorry to hear your familiy must deal with myeloma. I think a great first step is to educate yourself about myeloma, and you can make the first step by going to http://www.myelomasurvival.com and go through the listed blog posts and go to some of the resources at the bottom of the first page. Another excellent source on treatments is the Mayo Clinic recommendations shown at the link http://www.mSmart.org

      You state your father has 4% plasma cells, and normal bone marrow can have up to 5% plasma cells, a person is not considered to have low level smoldering myeloma if the plasma cells are below 10%. What was the level at diagnosis? Mine was 90%. The questions I would have would include.

      Is your dad high risk or low risk by FISH test or GEP(gene expression profiling)

      What are his light chain test levels, M spike, does he have CRAB symptoms? (High Calcium in the blood, renal problems, anemia, or bone problems)

      Given his risk profile(which chromosomes are abnormal if any), what treatment is listed on the mSmart program and is your father getting that treatment?

      But most of all make sure he is being seen by a myeloma specialist, because someone who sees 100 myeloma patients a year will live 3 times as long as one who go to a local oncologist. Go to the link http://myelomasurvival.com/myeloma-blog/multiple-myeloma-the-only-answer-until-there-is-a-cure to find out why a specialist is of most importance. Good luck and may God Bless your families myeloma journey.

  12. Hi Sir,

    My father has taken 4 cycles chemotherapy and taken the final test in last month but in the report shown 4 % palsma cells. could you please guide the best treatment.

    Thanks & Regards
    Surendra p

  13. My husband is a newly diagnosed MGUS patient. We live in Norway.
    He has got 12% plasma count of bone marrow test and his test results show that he has IgG-kappa high values and high Beta2- monoclonal values. M-spike is 25.
    He is not recommended any treatment yet, and there are no clinical trials for him in Norway.
    We have found information that there are good results for some patients taking high doses curcumin from MD Anderson and he takes 8grams every day. Unfortunately, his values of IgG go up quite fast (from 35 to 39 in 1 month!).
    I wonder whether he can join some very promising clinical trials for newly diagnosed MGUS patients. Please advise and HELP us if you can. Thank you very much.
    Regards,
    Victoria

    • Gary Petersen

      Victoria, The IMF Working Group has developed the definition of MGUS and Smoldering myeloma and usually if MGUS no treatment is recommended until it becomes high risk smoldering myeloma. The definition can be found at the link: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4432003/table/T1/ Based on the numbers you note it looks like your husband is at least smoldering, but I would suggest a second opinion from a myeloma specialist. An outstanding specialist in Scandinavia is Torben Plesner, MD – Vejle Hospital, Vejle, Denmark. Dr. Jesus San Miguel, MD – University Hospital, Salamanca, Spain and his group are doing great work on treating high risk smoldering patients with a hope by treating early many can be cured.
      Good Luck and May God bless your families myeloma journey/Gary Petersen

  14. Gary, thank you very much for your kind reply and the information. We will definitely contact the doctors you have recommended.
    Best wishes,
    Victoria

  15. Dear Gary,

    My mother is a multiple myeloma patient, which was diagnosed back in 2012. She previously received treatment using Lenalidomide and Bortezomib and later on also went through Autologous Stem Cell transplant.

    Her disease has shown progression and Myeloma has relapsed. The doctor has suggested that she is an ideal candidate for Pomalidomide in combination with dexamethasone.

    She has been prescribed to use Pomalidomide. The starting dose is 4mg/day on days 1-21 on a 28-day cycle.

    We are from Pakistan and it’s really difficult for us to afford such an expensive medicine. Is there anything you can suggest that we can use alternatively?

    Also the doctor suggests that once she obtains remission this time, we shall be making up our minds for Allogenic Stem Cell transplant.

    Please advise.

    Regards,
    Faizan Arif

    • Gary Petersen

      Faizan, I am not a doctor, nor do I know of a specialist in Pakistan. My first recommendation would be to get a second opinion from a myeloma specialist. In the USA, Mayo Clinic has put together a program called mSmart which provides a template for treatment. You can find the link at: mSmart.org A new Consensus in the Management of Multiple Myeloma in India at Myeloma State of the Art 2016 Conference was published recently and may also be of help. I will send a copy to your email address. Was a FISH test taken to determine if your mother is high risk or low risk myeloma? This is important to know for treatment, as well as if she is refractory to Bortezomib and or Lenalidomide. RVd, transplant, and R maintenance is a standard of care in the USA. Sorry I can not be of any further help. Best Regards/Gary

  16. Hi Gary,

    Thank you so much for all of the resources you’ve provided on your website.

    My father (age 74) has been monitored these last few years as a result of his ‘mgus’ diagnosis (his IgA levels have consistently been in the 900s mg/dl, but M spikes have been below 0.5). Last fall he had a pet scan (routine) and there were some small areas of interest in the neck lymph nodes and salivary glands. Previously he has had pet scans and they’ve been clear.

    The oncologist at msk (the one he’s been going to routinely the last few years) did not advocate for further imaging due to size of these lighter areas, thought it could be due to respiratory infection, etc. My dad sought a second opinion and that doctor highly recommended further imaging of the neck. He recently went for a follow up ct scan of that area and also found 2 small lytic lesions on his cervical spine. I believe both doctors received his Ct scan results and he was asked to have an MRI of that area for further imaging detail.

    I am very concerned as it seems like the doctor at msk was in more of the watch and wait camp whereas the second oncologist, who works out of a smaller hospital, seemed to be more proactive regarding the pet scan findings.

    Given the information that I’ve already listed above, is it time for my father to maybe try to get in with the very highly recommended Dr. Barlogie in NYC? My father lives in NJ – could get to Mt. Sinai hospital if needed.

    I just don’t have lot of experience with this disease and feel as though we aren’t getting a lot of clarification with his current situation.

    Any help would be greatly appreciated.

    • Gary Petersen

      MSK is an outstanding institution, but many doctors now recommend treatment as soon a the disease becomes active from smoldering. The link http://www.uptodate.com/contents/smoldering-multiple-myeloma shows the definition, and with more than one lytic lesion it goes from smoldering to active. I am not a doctor just a myeloma patient activist, so a second opinion from another myeloma specialist would be a great idea. I will send you a private email. Good Luck and God Bless your families myeloma journey/Gary

      • Dr Romana Akbar on

        Dear Gery,
        My husband has been diagnosed with a plasmacytoma of rib, his M protein level is 0.7g/ do, and it’s Ig A kappa.I want you to please recommend a good myeloma specialist in Pakistan. thank you

        • Dr Romana Akbar on

          Dear Gery,
          My husband has been diagnosed with a plasmacytoma of rib, his M protein level is 0.7g/ do, and it’s Ig A kappa.I want you to please recommend a good myeloma specialist in Pakistan. thank you

        • Gary Petersen

          romana, I could not find much when I searched but did fine the CIBMTR(Center for International Bone Marrow and Cancer Research) list of 500 transplant hospitals and they list the following 3 in Pakistan:

          – AMC Rawalpindi Pakistan
          – National Institute of Blood Diseases and Bone Marrow Transplantation Karachi Pakistan
          – Aga Khan University Hospital Karachi Pakistan
          The National Institute of Blood Diseases seems to have a lot of experience with myeloma. Good Luck and God Bless/Gary

  17. Hi Gary,

    Thank you so much for your quick response and for for forwarding my questions to Dr. Barlogie’s office. I apologize that I did not write back sooner, but work as a nurse and on night shift this past weekend.

    I forwarded those emails to my father, I hope that he will circle back with Dr. Barlogie’s office soon.

    The challenge right now is that we are unsure if my father is still on the mgus end of the spectrum or if his disease is advancing. My father is under the impression that Dr. Barlogie does not see mgus patients, and he didn’t want to waste the doctor’s time and potentially ruin any potential opportunities seeing Dr. Barlogie in the future if he starts to have more myeloma symptoms.

    My fear is that maybe he is moving further from the mgus end of the spectrum and needs some additional testing to determine when he may need treatment (for example he’s never had a bone marrow biopsy). I’m certainly not looking for a myeloma diagnosis, but I want to be sure that we’re asking the right questions to make that determination.

    A follow up from my first post – the spinal lesions we were worried about turned out to be hemangiomas, and probably have been there for quite some time. I am still alarmed because my father’s most recent IgA level (which was sitting in the 900s previously) is now over 1000 with his last blood tests, but his kidney function looks ok and he’s not showing signs of hypercalcemia.

    I know you’re not an MD but seems like you have a great deal of experience in this area. Any other feedback given the info above would be so greatly appreciated.

    Thanks very much again, Elizabeth

  18. My husband John had his own stem cell transplant at Stanford 8 years ago. He is still in remission with taking Revlimid every other day. We are moving to Tulsa, Oklahoma from California and looking for a Multiple Myeloma specialist. Let me mention that the true reason we are moving is Grandkids who are begging us to come. Any suggestions for a Doctor?
    Thank you! Jackie

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