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Who are the GREAT EIGHT of Multiple Myeloma Specialists?

3/28/2014

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 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 listed at the following link if you CLICK HERE.

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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Dr. Robert Orlowski - One of Myeloma Survival's GREAT EIGHT Discusses How Clinical Trials Have Changed Myeloma Treatment at MD Anderson

3/22/2014

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Dr. Orlowski was featured on the Cure Panel broadcast of March 28th. He discussed the role of Clinical Trials in the development and improvement of treatments for multiple myeloma at MD Anderson. You can listen to a rebroadcast of the program if your CLICK HERE. You might want to know more about Dr. Orlowski, and I have included a quick bio for Dr. Orlowski at the end of this post. It is my belief, a select few myeloma specialists stand above the rest. I believe Dr. Orlowski is one of them. 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 exceptional 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 of www.myelomasurvival.com. 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. What is remarkable about this list 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.

Short Bio

Robert Z. Orlowski, MD, PhD, is Director of Myeloma, and Professor of Medicine in the Departments of Lymphoma/Myeloma and Experimental Therapeutics, Division of Cancer Medicine, at The University of Texas M.D. Anderson Cancer Center in Houston, Texas. He is board-certified in internal medicine and medical oncology. Dr. Orlowski earned his doctoral degree in molecular biophysics and biochemistry from Yale University and his medical degree from the Yale University School of Medicine. He completed his internship and residency in Internal Medicine at Barnes Hospital at the Washington University in St. Louis School of Medicine. Dr. Orlowski has published numerous book chapters, articles, and abstracts on cancer therapy, with a focus on the molecular pathogenesis of oncologic disease processes and the mechanisms of action of chemotherapeutics.

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Beat the Multiple Myeloma Survival Rate! Ignorance IS NOT Bliss, and May Just Kill! Myeloma Awareness SAVES LIFE!

3/15/2014

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One in 5 newly diagnosed myeloma patients die in the first 60 days! 1 in 4 are gone within the first year. 97% of people have never heard of multiple myeloma.
D'OH!!! Lack of awareness, delayed diagnosis, wrong diagnosis, poor first treatments MUST be what makes early survival so terrible. I remember when I went to the doctor for high blood pressure and fatigue, and he decided to give me a blood test just because I had not had one in a year and found I had kidney failure. His first thought was that I had worked outside in the heat and was dehydrated and this was the probable cause. I then went to the hospital and they said it was likely one of three possibilities, most likely dehydration with the last and least likely was cancer. Tests finally turned out that it was myeloma. I was lucky that I was diagnosed just a week after I was checked by my doctor for fatigue. Prior to this I had noticed that if I bleed, it would take forever to stop. I thought that was odd, but now know it was due to very low platelets, and my fatigue was caused by a very low red blood cell count.

Just a short time after my diagnosis, I had heard of a patient who had died from multiple myeloma and his family was suing the VA hospital because he was diagnosed and treated for psoriasis with no improvement. They continued to treat him for psoriasis for some time, and he was finally diagnosed with multiple myeloma but too late to save his life.

So if awareness and knowledge can SAVE LIFE, we need people to understand how important it is to know the symptoms of myeloma and the way standard blood test results can help to show that myeloma may be present. From the American Cancer Society web site I found a summary which may just help to educate the yet to be diagnosed. It outlines the symptoms, a few of which are anemia, frequent infections, nerve tingling and damage, bleeding that will not stop, bone breaks in the spine and ribs, confusion, and kidney damage. A standard blood test can be an indicator of possible trouble, even if you show no symptoms. Low red blood cell count, low platelets, high calcium, low white blood cell counts, excess protein in the blood, and more depending on the number of variables tested. A better more extensive list of symptoms and the many diagnostic tests are available at the American Cancer Society site which you can read if you CLICK HERE.

For years the IMF and MMRF and LLS organizations have worked to get the word out, and with all of their fine efforts, myeloma is still an unknown orphan among cancers. Maybe we need a champion, someone like Katie Couric who has accomplished so much in the area of colorectal cancer screening. Since Katie took this as her cause after her husband was taken from her by colorectal cancer, colorectal screenings have increased to 64% for people over 50, and deaths have fallen by 30% because of this awareness of the need for screening. That is 21,561 fewer deaths each and every year. You can read about the remarkable drop in colorrectal cancer due to awareness of the need for screening if you CLICK HERE. Lacking a champion, it is up to the myeloma organizations and patient advocates to continue our efforts at MYELOMA AWARENESS.

One way for YOU to help with Myeloma awareness is by getting this message out to your facebook, twitter or other social media contacts. You may not know someone with myeloma but your contacts might, and you may just help to SAVE LIFE! Just Click the Twitter and Facebook icons at the end of this post.

Good luck and may God Bless your Cancer Journey. For more information on multiple myeloma survival rates and treatments CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1

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Tom Brokow has Multiple Myeloma - The Skin Cancer? No! The Blood Plasma Cell Cancer Where 1 in 5 Patients Die in The First 60 days! Myeloma GETS NO RESPECT!

3/8/2014

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Multiple Myeloma gets NO RESPECT!

Sometimes it feels like Multiple Myeloma gets NO RESPECT. If you have multiple myeloma, one of the first things a person will ask when you tell them you have multiple myeloma is, "Oh the skin cancer?" I will go into my standard response explaining that it is a cancer of the blood plasma cells in the bone marrow. Most people have heard of melanoma, the skin cancer.
Melanoma does have 4 times the cases as multiple myeloma, but just 1/2 the annual deaths. Talk about NO RESPECT. Their second comment is usually, "You look so good, no one would know you have cancer". And with a smile on my face and in hopes of lightening up the conversation I usually respond by saying: "Yes, we make the best looking corpses." This is usually followed by my cliff notes version of what is multiple myeloma, and how is destroys the immune system.

I had indicated in a previous post about how some of the newspaper articles had missed this point and really misrepresented this disease, or at least where it concerned the average patient. But some of the articles had a very central issue highlighted. Those articles included the following which you can click on and read:

Tom Brokaw's cancer diagnosis: What is multiple myeloma? | Fox ...
Tom Brokaw Has Multiple Myeloma. What Is It? - US News
We Can All Be Proud Of Tom Brokaw - The Myeloma Beacon
Tom Brokaw has Multiple Myeloma - Thank You for Making it Public .

I think this type of article is important because it recognizes how little is known about multiple myeloma in the general population, and the need to find ways to get SOME recognition for myeloma. March is multiple myeloma awareness month sponsored by the IMF and promoted by many organizations and myeloma advocates. Maybe with improved awareness we can get more recognition and help to educate the myeloma patients, general population, and the medical community in general. We might then move the average life expectancy from 4 years to closer to the 10 years achieved by the skilled multiple myeloma specialist. In addition, I wonder why 20 to 25% of the newly diagnosed die in the first year, and it might just be that improved awareness would help to diagnose patients at an earlier stage of the disease and bring this percentage down to more reasonable levels. For a blog post on the risk of not knowing CLICK HERE.

A recent video by Myeloma UK provides a very similar message, and it explains the lack of awareness results in the death of 1 in 5 new patients in the United Kingdom in the first 60 days after diagnosis. In addition, they found 97% of people surveyed had never heard of myeloma. To view the video CLICK HERE.

One way for YOU to help with Myeloma awareness is by getting this message out to your Facebook, twitter or other social media contacts. You may not know someone with myeloma but your contacts might, and you may just help to SAVE LIFE! Just Click the Twitter and Facebook icons at the end of this post.

Good luck and may God Bless your families' Cancer Journey. For more information on multiple myeloma survival rates and treatments CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1

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MyelomaSurvival.com Turns 2 - Happy Birthday!

3/3/2014

5 Comments

MyelomaSurvival.com is 2! YEA!

Time does seem to fly, it has now been two years since this web site published its first posts. I had felt deeply that there was a need to highlight the survival statistics of doctors and hospitals for myeloma. When I was first diagnosed 8 years ago I could find little performance based data on survival. I had found just two hospitals which accumulated their own data, and were using these metrics to improve survival. Those two were Mayo who had published a 33 month overall survival and UAMS, Little Rock which had published a 7 year survival.

Since that time more and more doctors and locations have been publishing their survival statistics or 15 hospitals in total. Those that do publish survival data for myeloma do so for a number of reasons, and those that do not publish their survival data have their reasons as well. Because myeloma is so rare most hematologist/oncologist do not see enough patients to have a satisfactory sample size to provide a statistically accurate survival rate. Which probably means they are also not qualified to provide acceptable care for this very complex disease. Most that do provide survival statistics use this data to improve survival by comparing life expectancy by treatment protocol, and then choosing the best for their patients. And just like some children will try to hide a bad report card, some hospitals do not want to suffer the embarrassment of publishing poor results. Some forward thinking administrations have made this data collection a priority as a key element to support their myeloma specialists. And finally, those that have exceptional survival outcomes want to let people know that they can give their patients MORE YEARS OF LIFE.

In this last year the site has had 160,413 visits, or two visits for every myeloma patient alive in the USA, as well as 310,235 page views. I thank all of the people who have commented and emailed me over this two year period for keeping me motivated and in the game. How can I not continue my efforts no matter how frustrating it can be when I get comments like this:

"What a site!! for the first time I have a clear picture of what I am facing and how to help myself. I have renewed confidence that I can actually deal with this disease. No other site or publication has done that. Thank you for spending your time and energy on providing this valuable service. God bless you and keep up your great work."

Good luck and may God Bless your Cancer Journey. For more information on multiple myeloma survival rates and treatments CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1

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Who are the GREAT EIGHT of Multiple Myeloma Specialists?

Dr. Robert Orlowski - One of Myeloma Survival's GREAT EIGHT Discusses How Clinical Trials Have Changed Myeloma Treatment at MD Anderson

Beat the Multiple Myeloma Survival Rate! Ignorance IS NOT Bliss, and May Just Kill! Myeloma Awareness SAVES LIFE!

Tom Brokow has Multiple Myeloma - The Skin Cancer? No! The Blood Plasma Cell Cancer Where 1 in 5 Patients Die in The First 60 days! Myeloma GETS NO RESPECT!

MyelomaSurvival.com Turns 2 - Happy Birthday!

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