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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]

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Next Step, How to Get a Second Opinion for Multiple Myeloma Treatment?

4/11/2012

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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]

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How do you define a Multiple Myeloma Specialist?

Next Step, How to Get a Second Opinion for Multiple Myeloma Treatment?

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