Multiple Myeloma Survival Rates and Life Expectancy by Hospital and Specialist
This web site provided a listing of survival rates of Multiple Myeloma Specialists. If you are under the care of one these exceptional myeloma professionals, you are between 1.9 and 5.7 times more likely to survive 5 years. You will also find a more complete listing of myeloma specialists that may not have survival statistics listed here but have an excellent reputation if you click Specialists. This site also includes a Multiple Myeloma Blog with a few of the most viewed posts listed below. Just click on any of them to view the blog post.
- Why do people die from Multiple Myeloma? Lack of Awareness??????
- Multiple Myeloma - Why Do People Beat the Average Myeloma Life Expectancy Prognosis?
- There is a NEW FUTURE in Multiple Myeloma Treatments - Survival Rates and Life Expectancy Surge Forward!
- Why do you need a Multiple Myeloma Specialist on your medical team?
- Multiple Myeloma Support Group Members DO have a longer Life Expectancy and Improved Survival Rate! But is it the chicken and the egg?
Multiple Myeloma is a blood cancer of the plasma cells(white blood cells found in the bone marrow) that requires treatment support from a skilled multiple myeloma specialist to provide you the best possible prognosis for the longest life expectancy. This site provides the most relevant multiple myeloma survival rate statistics that can be found or developed to provide multiple myeloma patients with survival rates by hospital, specialist, and region. At a recent Myeloma Cure Panel Broadcast on Cure vs. Control the panel which consisted of four long term myeloma survivors, authors, bloggers, and myeloma advocates had two universal recommendations for long term survival and improved life expectancy.
1. Having a multiple myeloma specialist on your team is critical to improve your life expectancy, and having one as your doctor or as a consult for second opinions provides your best chance of long term survival. You can find a multiple myeloma specialist on this site or by following some of the recommendations below or provided on the myeloma blog.
2. Given that there isn't a consensus about how to treat the disease, patients must unfortunately educate themselves about their options -- the patient must be his/her own advocate, beginning with learning about the disease and different treatment choices. It is important to get educated about Myeloma via various ways, including asking their doctors questions, taking advantage of the many excellent webinars & seminars, and sharing experiences via support groups both in person and on-line.
We ask that doctors across the US and the globe provide their currently available multiple myeloma survival rates or if not yet available then provide 2 and 4 year multiple myeloma survival rates to this site so that multiple myeloma patients can make some informed decisions about their doctors and the facilities that they choose for their care. I believe every patient has a right to know how his doctor or center compares, and this data should be available or made available.
The SEER(Surveillance, Epidemiology and End Results) data from the National Cancer Institute provides survival data for many cancers including multiple myeloma. The 3 year survival rate that they report for multiple myeloma is 55.6%, whereas the Mayo Clinic reports their 3 year survival rate at close to 90%. Dr. Hari of the Medical College of Wisconsin provided a 3 year survival rate of 93.8%* vs. the SEER data of 55.6%, the best 3 year rate yet reported on this site. Also a doctor in LA, Dr. Berenson has shown 5 year survival of 89.7%*, and this is much better than the SEER data of 41%. Therefore, you are nearly 5.7* times more likely to survive in his care than in the average facility. UAMS is an excellent center and publishes their average life expectancy of almost 9 years versus the recent SEER life expectancy of 4 years. We believe this type of information, if available, will be invaluable to all multiple myeloma patients. God bless you all who have to be on this journey! You can email us with your comments or suggestions at editor@myelomasurvival.com.
Any myeloma specialist who would like to participate in this site can submit their multiple myeloma survival rates using the procedure listed in the "Doctor submission" section. If any patient would like to recommend their myeloma specialist, please provide their name, hospital, and email address. We would then email them and invite them to participate. With your help we can "SAVE LIFE"!
If you cannot find a doctor who is located near you from this site, you may run a google or bing search 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 on your own, or you want to get more information on one of the doctors listed here, you can google or bing 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. Hari, or Dr. Palumbo.
If you cannot find a doctor who is located near you from this site, you may run a google or bing search 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 on your own, or you want to get more information on one of the doctors listed here, you can google or bing 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. Hari, or Dr. Palumbo.
The myeloma survival rates have been obtained on line or received from myeloma specialists are as follows, and the comparison data from the National Cancer Institute or SEER(Surveillance, Epidemiology and End Results) data base is at the following link: http://seer.cancer.gov/csr/1975_2009_pops09/browse_csr.php?section=18&page=sect_18_table.09.html
Western Region
Huntsman Cancer Institute, Salt Lake City, Utah - They list there average life expectancy of 10 years versus the SEER data of 4years. So this is 50% survival at 10 years versus the SEER data of 16.9%. Link: http://www.huntsmancancer.org/patient-care/clinics-and-programs/multiple-myeloma-program/multiple-myeloma-program
Institute for Myeloma & Bone Cancer Research(Dr.James Berenson), West Hollywood, CA - In a study of 100 of his patients his 5 year survival rate is 89.7%* vs. the SEER data of 40.9%. This is the best 5 year life expectancy yet presented on this site and means that your prognosis is 5.7* times better under his treatment than at that of the average SEER facility. This is truly a remarkable accomplishment. Link: www.berensononcology.com
Seattle Cancer Care Alliance(Fred Hutchinson Cancer Research Center) , Seattle Washington - Their web site was recently updated and shows a 40% improvement within the last 4 years and now lists a 5 year survival rate of 70.8% versus the SEER data of 44.5%. You are therefore 1.9 times more likely to survive 5 years in their care than in the average SEER faciltiy. Link: http://www.seattlecca.org/diseases/myeloma-survival-rates.cfm
Institute for Myeloma & Bone Cancer Research(Dr.James Berenson), West Hollywood, CA - In a study of 100 of his patients his 5 year survival rate is 89.7%* vs. the SEER data of 40.9%. This is the best 5 year life expectancy yet presented on this site and means that your prognosis is 5.7* times better under his treatment than at that of the average SEER facility. This is truly a remarkable accomplishment. Link: www.berensononcology.com
Seattle Cancer Care Alliance(Fred Hutchinson Cancer Research Center) , Seattle Washington - Their web site was recently updated and shows a 40% improvement within the last 4 years and now lists a 5 year survival rate of 70.8% versus the SEER data of 44.5%. You are therefore 1.9 times more likely to survive 5 years in their care than in the average SEER faciltiy. Link: http://www.seattlecca.org/diseases/myeloma-survival-rates.cfm
Southern Region
UAMS(Dr. Bart Barlogie), Little Rock AR - The 5 year relative survival rate for newly diagnosed patients is 79.4%* vs. the SEER relative survival data of 48.4%*. This means that you are 2.5* times more likely to be alive under their treatment than the average SEER facility. Their estimate for life expectancy for newly diagnosed Total Therapy 3 and 4 patients is now 15 years, which is the longest yet reported on this site and is 3.5 times longer than the 4 year average reported by the National Cancer Institute. Link: http://myeloma.uams.edu/upload/docs/Myeloma/MIRT%20Fall%20for%20web.pdf UAMS is one of the only if not the only facility that professes to CURE for multiple myeloma in approximately 40% of their low risk patients utilizing their Total Therapy 3a protocol. A great link to a debate at UAMS between Dr. Barlogie(UAMS) and Dr. Rajkumar(Mayo) about "Cure vs. Control" is as follows: http://myeloma.uams.edu/news/?sid=28&nid=9241
Shands at the University of Florida (Jan S. Moreb. MD) Gainsville, FL - For transplant patients under the care of Dr. Moreb, you are 7.8 times more likely to survive 2 years and 2.1 times more likely to survive 4 years, as compared to the average SEER facility. They have provided their transplant experience and report a 2 year survival rate of 95.4%* versus the SEER data of 64.1%, and a 4 year survival rate of 75.3%* versus the SEER survival rate of 49.2%. Receiving care through Dr. Moreb at Shands at the University of Florida provides another excellent facility for patients in the Southern Region. Link: http://www.medicine.ufl.edu/hemonc/moreb.asp
Midwest Region
Cleveland Clinic, Cleveland, OH - The 5 year survival has recently been updated and now is 68.3% vs the SEER data of 41.1%. This is an impressive 42% improvement over their previously published information. If you are newly diagnosed you are 1.9 times more likely to survive in their care than in the care of the average SEER facility. Note page 26 on the following link: http://my.clevelandclinic.org/Documents/outcomes/2011/outcomes-cancer-2011.pdf
Mayo Clinic(Dr. Martha Lacy), Rochester, MN - The Mayo Clinic Medical Edge Video from July 11, 2011 states that their 3 year survival has improved from 29% to close to 90%. When compared to the SEER rate of 55.6% you are at least 3* times more likely to survive under their treatment than at the average SEER facility. A recent analysis of 290 patients using LD or TD induction and delayed or early stem cell transplant reported equal 4 year survival of 82%* vs the SEER 4 year rate of 50%. Links: http://www.oncologystat.com/journals/journal and http://getmadcat.com/video/47064/ An outline of their risk adapted treatment program called mSmart can be found at the attached link: http://msmart.org/newly%20diagnosed%20myeloma.pdf
Medical College of Wisconsin(Dr Parameswaran Hari), Milwaukee, Wisconsin - They have provided their 3 year survival of 93.8%* vs. the SEER data of 55.6%. Their 2 year survival was equally impressive at 97.7%* vs. the SEER survival rate of 65%. This is now the best 3 year survival rate for a facility yet presented on this site. This is a remarkable performance and is exactly why this site was developed. This is such a great find, for a center that is not that well known outside the Wisconsin area, and has a myeloma patient population of 1000. I think Milwaukee's little myeloma treasure is no longer their little secret. If you are under the care of Dr Parameswaran Hari at the Medical College of Wisconsin you are 13* times more likely to survive 2 years and 7.2* times more likely to survive 3 years under their care than the average SEER faciltity. Link: http://www.mcw.edu/neoplasticdiseases/faculty/ParameswaranHari.htm#.T6Jn3Kt8Alc
University of Iowa Hospitals and Clinics(Dr. Guido Tricot), Iowa City, Iowa - Their web site lists the expected program average 10 year life expectancy of 50% vs. the SEER data of 16.9%. The expectation is that Dr. Tricot will duplicate his Huntsman results in his new position in Iowa. So you would be 3* times more likely to survive under Dr Tricot's treatment than at the average SEER facility. The link: http://www.uihealthcare.org/2column.aspx?id=228175
University of Kansas Medical Center (Siddhartha Ganguly, MD, FACP) Kansas City, Kansas – This is a new one on me, because if we adjust the observed survival for patients under the care of Dr. Ganguly, the relative survival rate for two years is 100.1%. What this means is that in the first two years Dr. Ganguly's patients have a better chance of survival than the average American without multiple myeloma. That is a remarkable performance. Also, you are 3.3* times more likely to survive 4 years, when compared to the average SEER facility. They have provided their transplant experience over the past 5 years and report a 2 year survival rate of 100.1%* versus the SEER data of 64.1%, and a 4 year survival rate of 84.8%* versus the SEER survival rate of 49.2%. Therefore, receiving care through Dr. Ganguly is one of the best options for patients with multiple myeloma in the Midwest region. Link: http://experts.kumc.edu/people/215-Siddhartha_Ganguly
University of Nebraska Medical Center (Edward A. Faber Jr, DO, MS) Omaha, Nebraska - For patients under the care of Dr. Faber, you are 5.9 times more likely to survive 2 years and 1.6 times more likely to survive 4 years, as compared to the average SEER facility. They have provided their transplant experience over the past 5 years, and report a 2 year survival rate of 93.9%* versus the SEER data of 64.1%, and a 4 year survival rate of 67.8%* versus the SEER survival rate of 49.2%. Therefore, receiving care through Dr. Faber at the University of Nebraska Medical Center is another excellent alternative for multiple myeloma patients in the Midwest. Since maintenance therapy with lenalidomide has only recently been adopted, Dr. Faber believes his 4 year survival statistics will continue to improve. Link: http://www.unmcphysicians.com/Doctors/Edward-Faber-Jr.aspx
Eastern Region
Dartmouth Hitchcock Medical Center - Lebanon, NH - They list a 3 year survival of 76.8 %* with auto transplant vs the SEER data of 55.6%. You are 1.9* times(with auto transplant) more likely to survive under their treatment than at the average SEER facility. Link: http://med.dartmouth-hitchcock.org/quality/metric_BMT/SURVIVAL_-_Multiple_Myeloma/Multiple_myeloma_-_3_year_survival
Europe
No data to date
General International Information
CIBMTR(Center for International Blood and Marrow Transplant Research)Transplant Hospitals - This grouping of 500 hospitals from throughout the world report their transplant data and list the average 2 year survival with auto transplant of approximately 83.9%* vs the SEER data of 65% and a 4 year survival of 69.9%* vs. the SEER data 50.2%. Link : http//www.cibmtr.org/ReferenceCenter/SlidesReports/SummarySlides/Pages/index.aspx (Slide 40 of the summary slides) This listing includes Dana Farber, Mayo, Ceder Sinai, UAMS, Weil Cornell, M.D. Anderson and many many more. In that each listed facility has provided this data to CIBMTR, you should be able to obtain their most current auto transplant survival data for multiple myeloma. The link to this listing is at: http://www.cibmtr.org/About/WhoWeAre/Centers/Pages/index.aspx
The Myeloma Beacon provides a listing of Multiple Myeloma Centers by state at the link: http://www.myelomabeacon.com/resources/treatment-centers/ This list is based on reputation which may or many not be a reflection of excellent survival rate performance. Many do however have survival rates listed on this site that are way about average. These include Mayo(Rochester), UAMS(Little Rock), Huntsman, et al, however the list does not include some of the very best centers like Dr. Berenson's IMBCR, which has the best 5 year survival, or Dr. Hari's Medical College of Wisconsin, which has the best 2 and 3 year survival. Please cross reference this list with those that have provided data to this web site. The listing looks very good, however, we do not have data to confirm the reputation for all treatment centers on the list. You may want to use the research tools identified above to find the multiple myeloma specialists at each of the listed facilities.
Hospitals with Studies or Clinical Trials with exceptional survival**
Southern Region
Mayo, Scottsdale, AZ - A multicenter study of CyBorD or treatment plan that consists of Cyclophophamide, Bortezomib, and dex, with a 3 year survival of 88% vs. the SEER data of 55.6%. So you would be 3.7 times more likely to survive in this trial than in the average SEER facility. An estimate for the survival of those that transplanted and those that did not is 95% transplant and 75% for non transplant. The link is as follows: http://www.myelomabeacon.com/news/2011/12/06/initial-treatment-with-cyclophosphamide-velcade-bortezomib-and-dexamethasone-cybord-compares-favorably-in-terms-of-response-rates-and-side-effects/
UAMS(Dr. Bart Barlogie) Little Rock, AR - A study called TT3 of VTD-PACE with dual transplant and maintenance has a 5 year survival or 78% vs. the SEER data of 40.9%. Under this myeloma treatment protocol your prognosis is 2.7 times better under his care than the average SEER facility. The specifics of this trial are in the attached article: http://jco.ascopubs.org/content/28/7/1209.full
UAMS(Dr. Bart Barlogie) Little Rock, AR - A study called TT3 of VTD-PACE with dual transplant and maintenance has a 5 year survival or 78% vs. the SEER data of 40.9%. Under this myeloma treatment protocol your prognosis is 2.7 times better under his care than the average SEER facility. The specifics of this trial are in the attached article: http://jco.ascopubs.org/content/28/7/1209.full
Western Region
Mayo Clinic(Dr. Mikhael) Scotsdale, AZ - This multicenter study of newly diagnosed patients includes Cylophosphamide, Carfilzomib(Kyprolis), Thalidomide, and Dexamethasone or (CYCLONE), has an overall response rate of 100%, and a CR rate of 35%. The results are too new to show overall survival, but initial results are very promising. The link: http://www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&confID=114&abstractID=99972
Midwest Region
Mayo Clinic(Dr Rakjumar) Rochester, MN - This multicenter study of Rd, or Revlimid and low dose dex shows a two year survival of 87% vs the SEER data of 65.6% This is with and without transplant. If you were under this treatment you would be 2.7 times more likely to survive. The data is in the following presentation: http://myeloma.org/pdfs/ash2007_rajkumare4a03.pdf
University of Chicago( Dr. Jakubowiak) , Chicago, Illinois - A multicenter study of Carfilzomib(Kyprolis), Lenalidomide, and low dose Dexamethasone for newly diagnosed patients shows a one year (PFS) progression free survival of 97% and 2 year PFS of 92%. Overall survival would therefore be higher than this, however when compared to the current standard of care RVd, this has little advantage for the newly diagnosed, however shows great promise for the refractory patient. It also had a sCR (stringent complete response) of 42%, which is quite remarkable. This study can be found at the link: http://www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&confID=114&abstractID=100344 or http://www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&confID=114&abstractID=100344
University of Chicago( Dr. Jakubowiak) , Chicago, Illinois - A multicenter study of Carfilzomib(Kyprolis), Lenalidomide, and low dose Dexamethasone for newly diagnosed patients shows a one year (PFS) progression free survival of 97% and 2 year PFS of 92%. Overall survival would therefore be higher than this, however when compared to the current standard of care RVd, this has little advantage for the newly diagnosed, however shows great promise for the refractory patient. It also had a sCR (stringent complete response) of 42%, which is quite remarkable. This study can be found at the link: http://www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&confID=114&abstractID=100344 or http://www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&confID=114&abstractID=100344
Eastern Region
Princess Margaret Hospital, Toronto, Canada - A study of CyBorD or Cyclophophamide, Bortezomib, and dex, with a 3 year survival of 88% vs. the SEER data of 55.6%. So you would be 3.7 times more likely to survive in this trial than in the average SEER facility. An estimate for the survival of those that transplanted and those that did not is 95% transplant and 75% for non transplant. The link is as follows: http://www.myelomabeacon.com/news/2011/12/06/initial-treatment-with-cyclophosphamide-velcade-bortezomib-and-dexamethasone-cybord-compares-favorably-in-terms-of-response-rates-and-side-effects/
Dana Farber Cancer Institute(Dr Ken Anderson), Boston Mass. - A multicenter study of RVD or Revlimid Velcade Dex with and without transplant provides a 18 month survival of 97% for all patients(with and without transplant) vs. an estimate of a SEER value between 1 and 2 years of 71%. This would be almost 10 times better for the patients in this trial. The data is available in the following link: http://www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&confID=74&abstractID=52410
Weill Cornell(Dr. Ruben Niesvizky) , NY,NY - BiRd or Biaxin, lenalidomide, and low dose dexamethasone had a 3 year survival of 89.7% vs. the SEER data of 55.6%. If part of this multicenter trial you are 4 times more likely to survive. The data is available in the following link: http://www.ncbi.nlm.nih.gov/pubmed/20645430
Dana Farber Cancer Institute(Dr Ken Anderson), Boston Mass. - A multicenter study of RVD or Revlimid Velcade Dex with and without transplant provides a 18 month survival of 97% for all patients(with and without transplant) vs. an estimate of a SEER value between 1 and 2 years of 71%. This would be almost 10 times better for the patients in this trial. The data is available in the following link: http://www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&confID=74&abstractID=52410
Weill Cornell(Dr. Ruben Niesvizky) , NY,NY - BiRd or Biaxin, lenalidomide, and low dose dexamethasone had a 3 year survival of 89.7% vs. the SEER data of 55.6%. If part of this multicenter trial you are 4 times more likely to survive. The data is available in the following link: http://www.ncbi.nlm.nih.gov/pubmed/20645430
Europe
University Hospital ( Dr. Jesús San Miguel) Salamanca, Spain - This multicenter trial of VMP Velcade-melpahalan-Predisone for older transplant ineligible patients provided a 5 year survival of 46% vs. the SEER data of 40.9%. The link is: http://ash.confex.com/ash/2011/webprogram/Paper37551.html
University of Torino(Dr. Antonio Palumbo) Torino, Italy - This muticenter study of VMPT-VT or Velcade-melphalan-predisone-thalidomide with Velcade- thalidomide maintenance shows a 3 year survival of 89% vs. the SEER data of 55.6%. This is with older transplant ineligible patients. If you were in this trial you would be 4 times more likely to survive than the average. Link: http://jco.ascopubs.org/content/early/2010/10/07/JCO.2010.29.8216.full.pdf Another study with PAD(Bortezomib, doxorubicin, and dex), two transplants, LP consolidation and L maintenance had a two year survival of 86% vs the SEER of 65.6%. Link: http://jco.ascopubs.org/content/28/5/800.full.pdf
*SEER numbers are based on Relative Survival (myeloma deaths only) whereas others are based on Observed Survival(all deaths) and as a result these numbers must be adjusted upward to be comparable to the SEER data. See page 3 for more information on methodology.
**All the drugs in the above trials have been approved for use in multiple myeloma in the USA and do not require clinical trials for use, however they may not be approved in every country.
*This multiple is computed by taking the the death rate of the SEER data (1-.41) and dividing it by the death rate of the hospital listed above(1-.897) or 5.7 times. Another way to look at it is to say of 100 people 59 have died in the SEER facility's in 5 years, while only 10.3 have died in the listed hospital's care. So you are 5.7 times (59/10.3) more likely to be alive in the listed hospital. This can be confused with a comparison of the survival rates. The survival rates are only different by 2.18 times or 89.7/41, which I believe is less valuable as a measure for the multiple myeloma patient community.
Excellent Multiple Myeloma Resources
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International Myeloma Foundation(IMF) - http://myeloma.org/Main.action Multiple Myeloma Research Foundation(MMRF) http://www.themmrf.org/ On Line Patient to Patient Support - http://listserv.acor.org/scripts/wa-ACOR.exe?SUBED1=MYELOMA&A=1 LLS(The Leukemia & Lymphoma Society) $10,000 Myeloma Co Pay assist - http://www.lls.org/diseaseinformation/getinformationsupport/financialmatters/copayassistance/ CureTalk(New treatments and clinical trials) - http://trialx.com/curetalk/ |
Managing Myeloma - http://www.managingmyeloma.com/ Myeloma Beacon - http://www.myelomabeacon.com/ Living with Multiple Myeloma - http://multiplemyelomablog.com/ Cancer Care Copay assist $3500 - http://www.cancercarecopay.org/apply.html |
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