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Thank You Dr. Bart Barlogie - You Have Been, and Will Continue to be Inspirational!

4/22/2014

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The rumors have been around for awhile.  Dr. Bart Barloge is 69 years old, well past retirement age, and rumored to be on his way to a leisurely retirement, to fly fish, vacation endlessly in Santorini, Greece, sky dive, swim with great white sharks, and ride a bucking bull named FU MAN CHU, etc.  But even when Bart retires he retires in place, and a letter explaining this follows.  However, I think Nick Van Dyk, a patient advocate, fellow Cure Panel member,  a patient and friend of Dr. Barlogie,  an ardent supporter of Total Therapy, said it best in his blog post. 

"My beloved doctor Bart Barlogie has led MIRT and UAMS since its inception, managing not just the clinical and research aspects but all of the administration of the center.  I've seen first-hand how hard the guy works -- 12 hour days 7 days a week are just the start of it.  He's never not thinking about his patients and this disease.

I'd been led to believe that he would be passing the torch -- partially at least -- as he confided in me some time ago that he's been looking for his successor.

Today, he has announced who it will be.  Bart will stay on in a clinical and research capacity, but the administrative "general manager" function will be handed off to Dr. Gareth Morgan, formerly head of the Myeloma unit at the Royal Marsden NHS Foundation Trust in the UK, and professor of hematology (or heamatology to those who speak The Queen's!) at the Institute of Cancer Research there.

I have mixed feelings about this, of course.  I'm glad to see my friend be able to slow down, and I'm heartened by the fact that he will continue his clinical practice and research activities.  However I also want to make sure he remains directing my care.  It's funny -- when I first got there, I learned of his passion for motorcycles and in giving him a book on the history of Ducati, I wrote in it that he's not allowed to get in a crash until he's cured me.  :)   No crashes that I know of, but he's also not allowed to retire until he's cured me, either!  : )"




The entire heartfelt post from Nick's blog can read if you CLICK HERE.

I, along with many of Bart's current patients, am just so thankful that he will remain at UAMS and we may continue to receive his exceptional care.  Dr. Barlogie has been one of the key figures in the center of the efforts to improve care, improve research, and treatment of multiple myeloma,  His treatment philosophies once considered radical and cutting edge, continue to be validated and incorporated in the front line treatment of the newly diagnosed.   This includes the use of stem cell transplant, Imids, Protesome Inhibitors,  Induction, Consolidation, and Maintenance therapy in first line treatment. 



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World-renowned multiple myeloma researcher and clinician Gareth Morgan, M.D., Ph.D., today was named director of the University of Arkansas for Medical Sciences (UAMS) Myeloma Institute for Research and Therapy (MIRT).
 
Morgan, who is currently a clinician and researcher with the Myeloma UK Research Centre at the Institute of Cancer Research in London, will begin at UAMS on a full-time basis in July. He is a director of Myeloma UK, a respected patient organization, as well as a member of the Scientific Board of the International Myeloma Foundation, Scientific Secretary for the UK Myeloma Forum and founding director of the European Myeloma Network.
 
Morgan succeeds Bart Barlogie, M.D., Ph.D., the institute’s founder who has chosen to step down as director but who will remain to focus on clinical care and research.
 
“I am thrilled to be taking up this new post and very much look forward to the opportunities it presents.” Morgan said. “With support from UAMS, I will build on the excellent work done to date as well as its reputation as world leader in myeloma treatment to develop innovative approaches for all myeloma patients and to characterize and cure high-risk myeloma.
 
“Myeloma is different for each individual patient, as different as one fingerprint is from another. It’s critical to develop technologies that can read this fingerprint, and to determine what is driving the disease in each individual patient, so we can kill or normalize the behavior of the myeloma cells. There isn’t a single treatment for myeloma but rather, there are many different, personalized treatment strategies, one of which is appropriate for a particular individual patient.”
 
Morgan said going forward, “We envision establishing a series of clinical trials investigating new treatments based on each patient’s unique myeloma fingerprint.”
 
“Gareth Morgan is an internationally recognized and respected scientist and clinician who works in the field of the molecular genetics and treatment of blood cell cancers — in particular, myeloma,” said UAMS Chancellor Dan Rahn, M.D. “The work he will do carries substantial promise of not only supplementing the research directions already being pursued within the institute, but in developing treatments with minimal toxicity.”
 
In support of the Myeloma Institute and Morgan’s recruitment, Gov. Mike Beebe has provided $5 million from General Improvement Funds. In a $3-for-every-$1 match, philanthropic contributions raised by UAMS have provided another $15 million for a total of $20 million. Goldman Sachs Philanthropy Fund, at the recommendation of Carol A. Ammon, chair of the Myeloma Institute Advisory Board, and her spouse Marie Pinizzotto, M.D., made the first matching gift of $5 million. The $20 million will help pay for the construction of new laboratories and the institute’s research program.
 
“As Governor, I am very pleased to provide funding to support the Myeloma Institute and Dr. Morgan’s research,” Gov. Mike Beebe said. “What has been built at the institute by Dr. Barlogie is truly remarkable and has enabled Arkansas to become a world leader in the research and treatment of multiple myeloma. With this funding and Dr. Morgan’s guidance, I’m confident the UAMS Myeloma Institute will continue pushing forward to fulfill its mission in innovative and dynamic ways.”
 
Morgan said he will align the expertise of the UAMS Myeloma Institute with other world-class research and treatment institutions around the world, especially with the Myeloma UK Research Centre at the Institute of Cancer Research in London. UAMS’ position as a leader for the treatment of myeloma will make it a central player in this global collaboration.
 
Barlogie, director of the UAMS myeloma program since 1989, is confident that Morgan is the right person to assume the reins and welcomes the opportunity for the two of them to work together.
 
“With a common vision and shared philosophical approach, Dr. Morgan and I can infuse the myeloma program with a forward-moving emphasis on utilizing research and technology to benefit patients,” Barlogie said. “By bringing together our collective experience, we will be optimally poised to implement the latest scientific and treatment advances, while maintaining a focus on each individual patient.”
 
Founded in 1989, the myeloma program at UAMS has seen more than 11,000 patients from every state in the United States and more than 50 foreign countries and has performed more than 9,000 peripheral blood stem cell transplants. Barlogie and his colleagues fundamentally have changed the course of the disease and its effects through new diagnostic procedures and novel therapeutic interventions.
 
 “We have excellent results leading to the cure of patients with myeloma. Now the major challenge relates to improving the clinical outcome of patients with genomically defined high-risk myeloma, a subtype of myeloma with a current median survival rate that does not exceed three years,” Barologie said. “Focusing research on this high-risk subtype of myeloma will also have strong implications for improving the outcomes of low-risk disease.”
 
The work Morgan proposes to develop is already in progress at the Myeloma Institute through the application of commercially available drugs that target unique oncogene mutations.
 
The expected five-year survival rate for a newly diagnosed myeloma patient treated at the UAMS Myeloma Institute is 74 percent, versus 43 percent for a comparable patient population in the NCI cancer statistics (SEER) data base. Newly diagnosed patients with genomically defined low-risk disease treated at the Myeloma Institute can expect a median survival exceeding10 years. Based on 25-year follow up of patients enrolled in the first “total therapy” clinical trial at the institute, a cure plateau of 15 percent has been firmly established.
 
Morgan holds more than $10 million of research grant funding from various governmental and private philanthropic sources.
 
“At the UAMS Myeloma Institute I envision conducting focused clinical studies investigating how to improve the current excellent clinical results obtained at the UAMS Myeloma Institute as well as investigating how such advances can be translated into wider populations by engaging in large phase-three studies including patients both in the United Kingdom and USA,” Morgan said.
 
Morgan received his doctorate on the genetics of leukemia from the University of London in 1991 and his bachelor of medicine in 1981 from the Welsh National School of Medicine. Since 2003, he has served as a professor of Hematology and director of the Centre for Myeloma Research at the Royal Marsden NHS Foundation Trust and The Institute of Cancer Research in London, Europe’s largest comprehensive cancer institute.  Morgan is a director of Myeloma UK, the UK’s respected patient organization, as well as a member of the Scientific Board of the International Myeloma Foundation and Scientific Secretary for the UK Myeloma Forum. He is also a founding director of the European Myeloma Network. 
 
To learn more, please myeloma.uams.edu. 

4301 W Markham | Little Rock, AR 72205 US




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Marijuana and  Myeloma - Who Would Have Thunk?

4/14/2014

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Sometimes truth is stranger than fiction.  Pat Killingsworth had a blog post titled, "Can Marijuana and Cialis really kill myeloma cells?" Well it is not fiction, but reality and you can listen to Dr. Donald Abrams, who is a cancer and integrative medicine specialist at the UCSF Osher Center for Integrative Medicine at Mount Zion.  He is also a vigorous supporter of using marijuana to help minimize a cancer patient’s side effects affectively and affordably, but has yet to see the hard data that supports efficacy against MM. 
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But does cannabis help fight cancer, too? If you click on the article title above you can see some data on the most recent research on this subject.  This Cure Panel broadcast was aired onApril 15 and you can listen to the rebroadcast if you CLICK HERE.  I had been knowledgeable of the fact cannabis was proven to be able to mitigate the nausea and discomfort caused by many therapeutic chemotherapy drugs.  However, what has recently been discovered is that cannibidiol (CBD), a non-psychoactive component of marijuana, had therapeutic value in multiple myeloma treatment.  After studying the effects of cannabidiol on multiple myeloma cells, researchers found that, “CBD by itself or in synergy with Bortezomib strongly inhibited growth, arrested cell cycle progression and induced MM cells death by regulating the ERK, AKT and NF-κB pathways with major effects in TRPV2+ cells.” They conclude that, “These data provide a rationale for using CBD to increase the activity of proteasome inhibitors in MM.”  Cannabis and Cialis, if it doesn't cure your myeloma you may just go out with a big SMILE on your face.  

Good luck and may God Bless your Cancer Journey or Trip.   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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Is Finding the Key to the Treatment of High Risk Multiple Myeloma the Road to Cure for ALL MYELOMA?

4/11/2014

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Dr. Rafael Fonseca Discussed Progress in High Risk Multiple Myeloma on the April Myeloma Cure Panel broadcast.  Dr. Fonseca is the deputy director, Mayo Clinic Cancer Center, Getz Family Professor of Cancer and professor of medicine, Scottsdale, Arizona. To listen to a rebroadcast of the program CLICK HERE. To view a recent summary by Pat Killingsworth please CLICK HERE. More information on the program follows:


I remember reading an interview on high risk disease which featured Dr. Rafael Fonseca (Mayo, Scottsdale) and Dr. Bart Barlogie (UAMS, Little Rock).  During that presentation from 2007 these two doctors, arguably two of the most knowledgeable about high risk myeloma in the world, were perplexed at the lack of progress in high risk myeloma treatment.  To read this primer on high risk myeloma CLICK HERE. 
I believe these two myeloma specialists remain in the leadership position in the treatment of high risk myeloma.  In the six years since this presentation, there has been a lot of progress in overcoming high risk features.   
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The deletion of chromosome 13 is no longer considered high risk with the use of Velcade, and the 4:14 translocation is less high risk if Velcade is used in long term maintenance therapy. Gene Expression Profiling and the use of FISH tests have become more  widespread  as a measure of risk, and we now have Kyprolis and Pomalyst and the new monoclonal antibodies.  All of these have yet to be fully evaluated for their effectiveness in the treatment of high risk disease. 

So why is success with high risk disease mean so much to the future of survival of myeloma patients? Because as myeloma continues to be treated, its genetic profile changes and continues to take on more high risk features and becomes resistant or refractory to prior treatments.  Therefore most patients with long term continuous treatment will have high risk features which will be untreatable with current methods. So most patients other than those low risk patients who have chosen to go for the cure and make it to 10 years in CR, will be confronted with high risk features.  Dr. Fonseca is involved or is familiar with the most recent high risk clinical trial results, as well as data generated from 60 years of myeloma survival results from the Mayo Clinic's extensive data pool.  

Dr. Rafael Fonseca will be discused the progress being made in High Risk Multiple Myeloma Survival on April 14, 2014, 6:00 p.m. EST on the Myeloma Cure Panel broadcast.  Dr. Fonseca is the deputy director, Mayo Clinic Cancer Center, Getz Family Professor of Cancer and professor of medicine, Mayo Clinic College of Medicine, as well as site director, hematological malignancies, Mayo Clinic, Scottsdale, Arizona.  To listen to the rebroadcast CLICK HERE.

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Multiple Myeloma -  Who May Just Save Your Life?  It Is Your Family Doctor!

4/5/2014

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We know that 1 in 5  multiple myeloma patients die in the first 2 months, 1 in 4 in the first year, so what could possibly be the reason?  Usually a MM patient will have symptoms, which will send them to their family doctor.  So why on earth do patients end up going to a hematologist/oncologist with advanced stages of this disease? I do not think that it is lack of insurance, but mostly because the average age is 70 years old and most people will have Medicare, and now ACA (Affordable Care Act) will help those who are younger.  Could it be that some patients refuse to see a doctor until they have let their disease progress too far?  I hope not. This is the Macho or Martyr approach to health care.   So why do we continue to have the misdiagnosis, slow diagnosis, and lack of diagnosis?  The SAD fact is that the lack of knowledge about multiple myeloma is not only in the general population, but also in the front line of health care or the family practitioner.  
PictureOnly some family doctors get Myeloma right the first time!!
With 97% of people having never heard of Multiple Myeloma, it may leave us to think that the average Family Practice doctor may have little to no understanding of myeloma and its symptoms.  A recent article by the Lancet exposed this in detail.  

"A study, led by researchers at the University of Cambridge, found that patients with breast, melanoma, testicular and endometrial cancers are more likely to be referred to a specialist after just one or two consultations.   However, patients with some less common cancers such as multiple myeloma, pancreatic, stomach and ovarian cancer, as well as patients with lung and colon cancers and lymphomas are more likely to require three or more visits to their family doctor before they are referred to a hospital specialist. Patients with multiple myeloma, a blood cancer that is notoriously difficult to diagnose since it mimics many other conditions, are 18 times more likely to require three or more pre-referral consultations compared with patients with breast cancer." - To see more CLICK HERE.  


As far as how this can delay a diagnosis and make it a far more advanced disease is highlighted in an article in  BMC Hematology.  "The time from symptom onset to diagnosis  varied markedly by diagnosis: acute myeloid leukemia being 41 days (Interquartile range (IQR) 17–85), diffuse large B-cell lymphoma 98 days (IQR 53–192) and myeloma 163 days (IQR 84–306)." The interquartile range (IQR), also called the midspread or middle fifty, is a measure of statistical dispersion.  This means that the middle 50% of patients required between 84 and 306 days to diagnose from symptom onset, but it also tells me that 25% of patients are diagnosed more than 306 days after going to the family practitioner for the first time.  To view the entire article CLICK HERE.  This has not fallen on deaf ears, but not the right ears.  Lawyers are starting to see the possible malpractice money in this new information, and you can see an example if your CLICK HERE.

From the American Cancer Society web site I found a summary which may just help to educate the yet to be diagnosed and their familiy doctor..  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. So we know what tests and measurements should be red flags for your family doctor to pursue additional testing or recommend seeing a hematologist/oncologist.  

Because the above data is average, there are some family doctors who outperform these averages.  My family doctor is  Dr. Arnold Fong of Ponte Vedra Beach, FL,  and based on this published data, I owe him my life.  He was an exceptional exception and had me diagnosed in just 7 days.  Thank You Dr. Fong, and I hope that everyone can find their Dr. Fong.

We need to get this information out to the general public and to your family doctor. One way for YOU to help with Myeloma awareness is by getting this message out to your facebook, twitter or other social media contacts and give it to your family doctor.  You may not know someone with myeloma symptoms 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. The United Kingdom's National Institue of Health  has put out a pamphlet for family doctors, just CLICK HERE.

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?

3/28/2014

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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. 
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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. 
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 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.
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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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PictureMultiple 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

 
PictureMyelomaSurvival.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



5 Comments

When Myeloma Awareness Month Falls Every March - DOES ANYONE HEAR US??

2/21/2014

7 Comments

 
March is Multiple Myeloma Awareness month, but how does a disease which effects just 20,000 people in 315,000,000 or just .0063 percent of the people in the USA annually, get any attention or awareness?  Breast cancer has 232,340 newly diagnosed annually or 11 times more cases but just 2 time more deaths.
Picture
Everyone knows about breast cancer and should, but few if anyone other than those effected by myeloma have heard of multiple myeloma. It is therefore really important we work together, or we will not be heard. 

We have some outstanding organizations that have helped to create awareness, raise funds, and spearhead drug development. Organizations like the IMF (International Myeloma Foundation), MMRF (Multiple Myeloma Research Foundation), and LLS (Leukemia & Lymphoma Society), and they do the best they can to get the word out, however somehow the average life expectancy remains at just 4 years for the third straight year in a row based on the statistics provided by the National Cancer Institute. In March of 2012, I wrote an article headlined "Why Do People Die From Multiple Myeloma? Lack of Awareness!!!", where I was trying to understand how multiple myeloma specialists had patient survival of 10 years of more but the average for all patients remains at just 4 years. To read the article CLICK HERE.  
 
We also have a number of selfless, generous patient advocates, which include Mike Katz, Pat Killingsworth, Jennifer Ahlstrom, Lizzy Smith, Cynthia Chmielewski, Jack Aiello, Suzierose, Matt Goldman, Nick Van Dyk, Danny Parker, Cure Talk and Beacon contributors,  et. al, who work tirelessly to get the word out and raise awareness, all while fighting this disease.  We recently got the Tom Brokaw Bump (not a new dance) from his selfless and brave announcement of his condition.  Google searches and views of my site doubled and tripled the week of Tom's announcement, but are now back to previous levels.  It remains up to the selfless and knowledgeable myeloma advocates and myeloma organizations to continue their outreach efforts because each of these advocates know that a knowledgeable myeloma patient  who has a MYELOMA SPECIALIST on their team will outlive the average life expectancy by a factor of 2 to 4, or 8 to 16 years vs. the current average of 4 years.  And this 6 years of extra life for the 80,000 myeloma patients represent 480,000 years of life, and another 120,000 years of life with each new year of newly diagnosed.    

I question some of the recent headlines in the news lately, but only because I think they need to add some fine print.  Some of the headlines are:

Tom Brokaw's Multiple Myeloma Cancer and His Hopeful Future ...

Brokaw's multiple myeloma called incurable but treatable - USA Today

Tom Brokaw Diagnosed With Cancer, Prognosis Encouraging

Tom Brokaw reveals cancer diagnosis; doctors are 'optimistic' - CNN ...


These are all accurate, but only with some qualifiers.  For reasons I have yet to understand completely, the prognosis for the average patient is for them to live an average of just 4 years with 20% dying in the first year, and this is not too hopeful, encouraging, and optimistic.   The qualifying fine print should therefore read, the future is hopeful, encouraging, and optimistic if Tom has a skilled multiple myeloma specialist on his team, (he does). He goes to a facility that does genetic testing and is extensively involved in clinical trials (he is), is at a facility that tracts survival statistics and knows the results for every type of treatment in use at their facility (they do), is a low risk case which is 85% of cases based on genetic testing (I have no idea what his risk factors are).  And, finally some of the most skilled myeloma specialists have stated they believe a minimum of 10% to 40% of their patients will be effectively cured using currently approved drug combinations and a protocol including induction, transplant, consolidation, and then maintenance, or in one case no transplants. 

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.

The Symptoms of Multiple Myeloma can include:
  • Bone pain and skeletal fractures, including compression fractures of the spine, which can cause severe pain, particularly in the back. A backache that lasts for months can be a signal that multiple myeloma is affecting bones in the spine and/or the ribs.
  • Frequent infections, especially bacterial infections of the respiratory and urinary tracts, which occur because the immune system is weakened.
  • Fatigue, weight loss, and general discomfort caused by anemia (insufficient red blood cells).
  • Nausea, vomiting, altered mental state, depression, and headache, caused by abnormally high calcium levels in the blood (hypercalcemia).
  • Loss of kidney function, leading to fatigue, buildup of fluid in the lower limbs, nausea, and vomiting.
  • Bruising, rashes, nosebleeds, vision loss, headache, dizziness, and peripheral neuropathy (numbness, tingling, and burning pain in the extremities) caused by blood that has thickened (a condition called hyperviscosity) due to high levels of protein.
  • Shooting pains in the arms and legs caused by a tumor in the spinal column pressing on nerves.

In about one-third of patients, multiple myeloma is detected before symptoms appear through routine blood tests that show elevated levels of immunoglobulin proteins.

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


7 Comments
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    Gary R. Petersen
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