You know all the big names so you and I probably think that it has to be one of them.  Must be Mayo Rochester, Dana-Farber, UAMS, or Moffitt!  No, it is the Medical College of Wisconsin in Milwaukee, Wisconsin.  Their myeloma program is headed by Dr. Parameswaran Hari, and  their program currently has 1000 multiple myeloma patients under their care.

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 2 and 3 year survival rates 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.  I think Milwaukee's little myeloma treasure is no longer just their 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 under the care of the average SEER faciltity.  Link: http://www.mcw.edu/neoplasticdiseases/faculty/ParameswaranHari.htm#.T6Jn3Kt8Alc  

Together we can "SAVE LIFE"/ [email protected]

Now if you agree on getting a second opinion, how do you go about doing it?  I did a little checking and know that there can be a  wide variation in the cost and time for a second opinion.   Much of your decision will be based on your insurance coverage.  Do you have coverage, and if you do, is the second opinion covered?  Most insurances do cover a second opinion; however, they may limit the places you can use, and may have other limits.  You will need to check with your insurance company, or the hospital may have personnel that will help you to determine and obtain coverage.  Another issue may be the cost of travel, in that some specialists do require that you travel to their location, and spend from one to four days at the location.  This can add up as well.

There may be other methods of obtaining a second opinion, but I have found three.  The first is the hospital visit, the second is the phone consult, and the third is an online consult (This is a new and a very interesting concept) 

So you have chosen a few hospitals, and start the process.  What will you expect to find?

The Hospital Visit

-Dana Farber(Boston)has a contact number of 617-632-3823.  They will be set you up for a phone conference with a care coordinator that will take you through the process. They will have you send your multiple myeloma files(bone marrow biopsy, MRI or PET scans) to them and set up a day when you will visit.  On the day of the visit, they then draw blood in the morning , and later in the day you will discuss the second opinion with a multiple myeloma specialist.  The cost without insurance is about $700 for the consult and $2000 for the lab tests.  This is frequently covered by reasonably adequate insurance.  

-UAMS(MIRT) will go through the same process, but their program is extensive, and requires a bone marrow biopsy, PET, MRI, and CAT scan, blood tests, and many other tests.  Their appointment number is 510-686-8230. They too will have you talk to a patient consultant to take you through the insurance issues and scheduling.  The process takes four days.  Three days for tests and the last day for the meeting with the multiple myeloma specialist.  The cost of this process is between $34,000 and $38,000, so if you have insurance you can determine what your out of pocket and copay would be.  

-Mayo Clinic(Rochester) has a appointment number of 310-423-0702.  They will have you talk with a patient support person who will ask you questions to see if you qualify for a second opinion.  They ask the basic information, including what insurance coverage you have.  They will then schedule a date and send out a packet with instructions on what you need to provide.  They indicated that while the consult lasts two hours, you should plan on two to four days total because most likely additional tests will be required.   After the visit a plan would then be send to you detailing your treatment recommendation.  I asked what the cost might be, and was told that it will vary!   One of the problems I saw is that many of the best known of the Mayo specialists had no availability out two months or more.  If anyone has recently been to Mayo for a second opinion, please let us know what your billed and out of pocket costs were.  

-Dr Berenson(IMBCR-Los Angeles) has a contact number of 310-623-1222.  They also requires a visit, but he was available within one week, and the cost was $1000 (updated 9/17) for a one hour consult, and this cost is often covered by insurance.  A patient coordinator will take you through the process. Prior to the visit you would be required to send out your BMB, MRI or Xray bone assay, and current treatment history.   If you are in the Los Angeles  area this would be one on the least expensive ways to get a second opinion with a specialist with some of the very best patient survival experience.  

Phone Consult

Dr. Durie(Cedars-Sinai) is one of the few doctors that provides a phone consult.  These are not usually covered by insurance and cost $250.  You may want to check with your insurance company.   Because Dr. Durie is world-renowned and heads the IMF(International Myeloma Foundation) he is in high demand for his services. When I called there was a two month waiting list.  The number to call is 310-423-0702, and  they will take you through the process and send you a cover letter with their request for medical information. This is another great inexpensive way to obtain a second opinion without the cost of travel,  however you must be able to wait. 

Online Consult 

The online consult  is something that I just recently ran across on the internet.  The following  web site provides an opportunity to do a online consult with one of four Myeloma specialists via video chat: https://2nd.md/disease/multiplemyeloma  On 5/26/2015, I received a clarification of coverage and cost from 2nd MD and they wrote the following: "Hello, I am a nurse with 2nd.MD. We received a request from a new client who found us on your website. While we appreciate the link to our page and the information on our services, we do not want anyone to be misinformed. Most of our clients have the benefit through their employer, for those clients the service is free to use. The service is available to individuals, However, cost of the service for individuals is $3000 per case. Please let me know if you have any questions or would like any additional information."


Pat Killingsworth, an author and myeloma advocate, has published  an article where he discusses why and how you should get a second opinion. I believe that you will find his article of value as well.  You  can find the article at the following link: http://www.myelomabeacon.com/headline/2011/07/21/pats-place-when-and-how-a-myeloma-patient-should-get-a-second-medical-opinion/  I hope that this information helps to get you started on the process of obtaining a second opinion from a myeloma specialist, who will work with your local hematologist  to provide you the best treatment plan to help you beat the odds.  In addition, if any of the blog readers have other suggestions or a great experience, please let us know.  God bless all who have to be on this Multiple Myeloma jouney/  [email protected]

I  am a member of the North Florida Multiple Myeloma Support group, and I had the opportunity to observe the the beginning of a new era for multiple myeloma care in the North Florida area.  Dr. Asher Chanan-Khan, the head of the new Multiple Myeloma program for Mayo Jacksonville was a guest speaker at our monthly meeting.  To say I and the group were impressed with him would be an understatement.  Mayo has some of the finest Myeloma only focused programs in the world, with world class programs in Rochester and Phoenix. Now they are bringing the same Myeloma only focused program to the Jacksonville area.  With this comes a wealth of knowledge and new clinical trials that allows patients to obtain leading edge treatments.   He was by far one on the most patient centric, caring, clearly understood, and skilled Myeloma Specialists I have had the opportunity to hear present their views on a very complex disease.  I believe the survival rate at Mayo will continue to improve under his leadership.  Dr. Chanan-Khan, we very much welcome you to North Florida. 
Asher Chanan-Khan, M.D.

Usually when you go to a doctor, you trust that they are skilled in the type of illness that you have and that they will provide you with the care you need.  In general, this is true, however, if your illness has a very high level of complexity, you often are recommended to a specialist who has addition education and skill in your specific illness. Multiple Myeloma is a Plasma Cell blood cancer that is highly complex, and requires the supervision of a specialist. 

 Dr. Rajkumar a multiple myeloma specialist at Mayo Clinic, recently wrote an excellent article in the Myeloma Beacon that put in patient friendly terms the difficulty of determining the life expectancy of any individual. However, his explanation really centers on just how complex this disease is and the need for someone with the skill of a myeloma specialist.The link: http://www.myelomabeacon.com/news/2012/03/01/understanding-prognosis-in-multiple-myeloma/ If you read many of the clinical trials, or just listen to doctors discuss multiple myeloma, you will soon find your head spinning.  And this is if you are not in the initial “Good Lord Why Me?” phase of the disease, when we are all in a fog.  A recent article by Pat Killingworth(a myeloma advocate) discusses why you should get a second opinion from a myeloma specialist as a requirement to ensure the best results.The link:http://www.myelomabeacon.com/headline/2012/03/05/pats-place-why-should-a-multiple-myeloma-patient-get-a-second-opinion/ 

This summary does however leave out one key point that can not be overlooked. This point is that the data indicates that the myeloma specialist now shows a significant survival advantage over the averages that are provided by the National Cancer Institute(SEER). Over the last 10 years the National Cancer Institute has published a 3 year survival that has gone from 45.8% to 55.6%, or a 20% improvement. The Mayo Clinic, Rochester publishes its current 3 year survival rate at close to 90% or a 97 % improvement over the National Cancer Institutes 3 year rate of 45.8%.  Dr Berenson, a specialist in LA, publishes a 5 year rate of close to 90%, and UAMS has a 5 year rate of 74%.  In the last several years new drugs and clinical trials have helped to increase the chances of a longer life, however, this information must not be filtering down to the local oncologist or the National Cancer Institute numbers would show greater improvement. When this author was diagnosed with multiple myeloma some 6 years ago, I searched the internet and found the hospital that listed the best life expectancy and the result so far has been nearly 6 years in CR(complete response).  So in summary, follow the numbers, and find the best specialist near you or nationally that can ensure you get the best most up to date care which will result in the best chance for your long term survival.  

Just added Mayo Clinic, Rochester to www.myelomasurvial.com.  If you look at the Mayo Clinic video "Surviving Myeloma"  Dr. Lacy comments that since she has been on staff she has seen life expectancy go from 29% to close to 90%.  This, when compared to the SEER data means you are over 3 times more likely to survive 3 years under the care of Mayo, Rochester's than in the average SEER facility.  This improvement is truly remarkable, in that the SEER  3 year survival rate has really not moved much over the last 10 years.  Good luck and God Bless you in your Myeloma journey/ [email protected]