Blog Posts - Multiple Myeloma - Survival Rate Statistics by Hospital

Thank You Myeloma Patient Community For Your Support Of Myelomasurvival.com

1/12/2015

Thank you for a very good 2014. It was an excellent year for the myelomasurvival.com web site, and I would like to thank all the people who have viewed the site, left comments, made suggestions for improvement, and thanked us for the information we provide to improve life expectancy and survival rate outcomes for the myeloma patient community. In 2014 we have had a total of 223,060 site visits, or 3 visits for every myeloma patient in the USA, and 479,902 page views. Those numbers are taken from the myeloma survival site usage statistics below.

In addition, if you search the following phrases with Google, myeloma survival shows up in the search results as follows:

Multiple Myeloma Specialists - listed on Page 1
Best Multiple Myeloma Hospitals - listed on Page 1
Multiple Myeloma Survival Rate - listed on Page1
Multiple Myeloma Life Expectancy - listed on Page 1

Thank you for your support, and let's all hope and pray for the cure for all myeloma patients.

Multiple Myeloma ASH 2014 Hidden Treasures - Some Items Which Flew Under The Radar!

12/30/2014

ASH 2014 - Hidden Treasures

Sometimes you find the very best ideas in the least likely places. Going into ASH, I knew I would hear about all manner of iterations around the monoclonal antibodies, and yes I did and it was great news. It seems no matter what you do with SAR and Daratumumab they help to provide improved response and potentially improved survival rates. Now I just hope and pray they are approved for use by all patients.

But sometimes very promising ideas seem to fly under the radar. If you were at some of the "high profile" presentations you have to get to the conference hall early and you still might end up in an overflow room. But if you go to one which uses old line drugs in new ways, or go to one of the sessions on research, seats are available in abundance. But it is in these less popular sessions where I was able to glean some excellent information on a new treatment for high risk disease and potentially game changing ideas.

Potential game changing ideas -

Irene M. Ghobrial, MD - Dana-Farber Cancer Institute, Boston Mass.

Dr. Ghobrial discussed the effect the Bone Marrow Micro-environment has on the progression of multiple myeloma, and ways to make this micro-environment inhospitable to tumor growth. Her research has shown this micro-evironment has been modified in mice with exceptional results. IF this could be translated to success in human trials, this could be a potential CURE. To view a link to the abstract CLICK HERE. Just be aware that this link may make your eyes glaze over.

Marta Chesi, PhD - Mayo Clinic, Scottsdale, AZ

This research revolves around using a genetically engineered mouse model to determine the likelihood a drug will have efficacy in humans. Mayo is now using this model to prioritize which drugs will likely provide the best potential for success. This could speed up drug development, as well as an effective way to check many existing drugs and herbal medicines. You can read the abstract if you CLICK HERE.

New High Risk Treatment Protocol -

Maria-Victoria Mateos, MD, PhD - University Hospital of Salamanca Institute of Biomedical Research of Salamanca (IBSAL) Salamanca Spain

This study compares a Sequential Vs Alternating Administration of Bortezomib, Melphalan, Prednisone (VMP) and Lenalidomide Plus Dexamethasone (Rd) in Elderly Patients with Newly Diagnosed Multiple Myeloma (MM) Patients. The study included all newly diagnosed patients, but the surprise was the results for the high risk group with a PFS of 28 months and a 3 year overall survival of 64%. This would suggest the OS would come in at about 4 years, or twice the existing OS of 2 years. This is with an older non transplant eligible patient population. To view the abstract CLICK HERE. Dr. Lonial of Emory University has the only other high risk data which is better than this and you can find this information if you 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

Navigating the ASH 2014 Myeloma Maze - Making It REAL For the Patient and Caregiver.

12/15/2014

When I was at one of the sessions that focused on the new exciting research which is being conducted on myeloma, I came to the realization that I was understanding less than 20% of what was being said. I gave the presenters 100% of my attention, and at some points I thought my head would explode. I saw people (researchers and scientists) in the room checking their cell phones, typing, and listening as well, and came to understand if much of what was being said is confusing to me, a relatively informed myeloma advocate, how is the newly diagnosed to sort through this Myeloma Maze.

One way will be to listen to the ASH 2014 Cure Panel Broadcast by Dr. Parameswaran Hari, one of my Great Eight of worldwide myeloma specialists. This program offered patients an opportunity to ask their questions to one of the very best of the best, and hear his perceptive of all of the research, clinical trials, and treatments presented at ASH. The broadcast aired December 17th. To listen to a rebroadcast of this exceptional program CLICK HERE.

As patients, if you go to the abstracts from the ASH, I think you will get lost in this massive maze of information. Some of the best summaries by the IMF, MMRF, MyelomaCrowd, Cure Talks, and Myeloma Beacon are now available on line and provided by myeloma advocates as fellow patients themselves try to make their reports patient and caregiver friendly. All of these organizations send a number of patient advocates to attend and cover most all of the sessions. For example, my fellow Cure Panel members Jack Aiello, and Cynthia Chmielewski represented the IMF, and MyelomaCrowd had Pat Killingsworth, Lizzy Smith, Jenny Alhstrom, and myself. To read these patient friendly summaries from ASH 2014, the following sites would be my first choice for information.

IMF - The IMF 2014 at ASH, Support Group Leaders Perspective

MMRF - ASH 2014 Day One Roundup and Day Two Roundup

Myeloma Crowd - ASH 2014 Highlights http://www.myelomacrowd.org/

Myeloma Cure Talks - ASH 2014 and many other great Myeloma Broadcasts

Myeloma Beacon - ASH 2014 Coverage

Myeloma Blogs of ASH - Living with Multiple Myeloma and Myeloma Survival Blog

You get all of the new study data on the currently approved drugs Kyprolis & Pomolyst, as well as the yet to be approved new class of monoclonal antibody drugs Elotuzumab, Daratumumab, and SAR. In addition, new oral proteasome inhibitors of Oprozomib and Ixazomib offer the potential for an all oral treatment as a substitute for the current standard of RVD. The V is velcade and is currently administered by IV or subcutaneous injection at the clinic. I will not go over that which has been so well covered by all of these exceptional myeloma advocates. Please take the time to visit each of the links above for a patient friendly tour though the ASH 2014 Myeloma Maze. The topic for my next blog post will be the exceptional research which looks to have a very positive result for high risk myeloma and some research which may finally lead us to a CURE for all patients, but seems to have flown under the radar.

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

Myeloma At ASH 2014 San Francisco - The Earth MOVED!!

12/10/2014

Please mark your calenders for the summary highlights by Dr. Paramaswaran Hari for ASH 2014 on December 17th. For broadcast info CLICK HERE.

I was at a meeting for the Myeloma Crowd Funding Intiative at ASH, and a question was asked, "Why has Myeloma shown such remarkable progress with new drug development and patient survival?" This is even though myeloma is an orphan disease, underfunded compared to other cancers (half the funding per life lost), and with few patients to entice major pharma to invest.

I am convinced it is what you see in this picture above. I believe it is the rare breed of selfless medical professionals who chose myeloma as their focus. What you see here is a doctor from Dana Faber (Dr. Irene Ghobrial), one from New York Presbyterian Hospital-Cornell Medical Center (Dr. Ruben Niesvizky), and another from Memorial Sloan Kettering Cancer Center (Dr. Ola Langren) all enjoying San Francisco together. But what it really shows is the cooperation, common purpose, team philosophy, enthusiasm, and obvious friendship which exists in this very small, underfunded community of doctors who take on this complex, incurable (most say) disease. Like the early astronauts, I think this group of medical explorers have the "Right Stuff".

Another example of this myeloma camaraderie at the meeting became apparent where a cross city competition between Massachusetts General Hospital and Dana Farber should be obvious but was absent in the cooperative, friendly ,and family feel of the interactions between Dr. Irene Ghobrial (Dana Farber) and Dr. Noopur Raje (Massachusetts General Hospital). The absence of a political agenda was so refreshing. It was like they were on the same team and focused on a common purpose, myeloma.

What could these remarkable doctors do if they got the average funding of other cancers or twice the current funding? I hope and pray the new Myeloma Crowdfunding Intiative will help to provide this remarkable group of doctors the resources, which I believe they can turn into a cure for myeloma and progress for all cancers. I think the best of the best became astronauts and rose to the impossible challenge of "landing on the moon". At the meeting, Dr. Tricot mentioned myeloma is complex because it is in the blood and circulates throughout the body, and can not be cut out like a solid tumor. This creates special challenges , which may be one of the reasons myeloma has attracted such a remarkable group of medical professionals who are challenged by this complexity and continue to do more with less. What could they do if they were funded adequately?

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

What A Great Myeloma Initiative - Crowd Funding To Find The CURE!

12/4/2014

Myeloma survival has improved, and it has all come through research and clinical trials. This has required funding and I believe cancer research is woefully underfunded. I referenced in my last blog post that spending for car safety equipment for all cars sold each year was 80 times greater per death or fatality than for cancer. Cancer spending by the NCI (National Cancer Institute) is $8843 for each of the 580,350 cancer deaths, and you can contrast this to the 33,561 who die yearly in auto accidents. So which is the larger national problem, and which deserves more funds?

Rare diseases like myeloma do not get their fair share of these very limited funds. Of the $4.9 billion of NCI funds for all cancers, multiple myeloma receives just $45.4 million or $4093 per life lost. So Myeloma gets less than half of the average, and I would argue orphan diseases are all underfunded. To make up for these funding shortfalls rare diseases have developed new ways to fund research.

This is so very important in that federal funding is being cut at the national level and as can be seen below myeloma has taken some substantial hits. Funding for myeloma from 2012 to 2013 was slashed by 13%

So how do rare diseases obtain funds? An article, written by Nick Dragojlovic and Larry Lynd, presents descriptive data on 125 crowdfunding campaigns aimed at financing research in oncology. Link: http://www.sys-con.com/node/325020. It identifies crowdfunding as an aid in cancer research to raise money for early stage research for drug development, which is notoriously difficult to obtain, and almost impossible for rare diseases like myeloma. The numerous platforms available for initiating a crowd-funding campaign make this approach particularly attractive for patient advocacy groups who wish to raise awareness of rare diseases and raise money for early stage trials.

This leads me to a new Myeloma Crowdfunding program called The Myeloma Crowd Research Initiative. The following press release provides an outline for the new program and the list of exceptional myeloma specialists who will be providing their experience and expertize to help determine which clinical trials and research show the most promise and are deserving of being pursued. Crowd funding and the Myeloma Crowd Research Initiative is a potential game changing process where new exciting initiatives can be funded without the crippling limitations of the existing process. So I believe the MCRI can help fund the cure for myeloma and SAVE LIVES and be a synergistic addition to the already valued IMF and MMRF.

SAN FRANCISCO, Dec. 3, 2014 /PRNewswire-USNewswire/ -- The CrowdCare Foundation is announcing the first crowd funding initiative for myeloma research at the American Society of Hematology 2014 conference. The Myeloma Crowd Research Initiative (MCRI) is a new approach to funding cancer research; combining the skill and knowledge of leading myeloma specialists with the patient perspective and supportive patient social communities to select and fund promising research projects in myeloma.

Research proposals will be accepted on the www.myelomacrowd.org website beginning February 1, 2015. As an initial phase of the MCRI project, both a Scientific Advisory Board and Patient Advisory Board will work together with various research communities to source the most promising research projects in myeloma. The MCRI panel will filter the various projects and initially select two new projects to receive funding. Once chosen, the Myeloma Crowd will launch a crowdfunding campaign for each project in April 2015. All proceeds for each campaign will be donated to the two final projects. Donors will know exactly how their donation is being applied.

Leading this initiative are expert researchers and patient advocates. The founding members of the MCRI Scientific Advisory Board include: Dr. Ola Landgren, MD, PhD (MSKCC), Dr. Guido Tricot, MD, PhD (University of Iowa), Dr. Irene Ghobrial, MD, PhD (Dana Farber Cancer Institute), Dr. Rafael Fonseca, MD (Mayo Clinic Scottsdale) and Dr. Noopur Raje, MD, PhD (Massachusetts General Cancer Center). The MCRI Patient Advisory Board includes Pat Killingsworth (multiplemyelomablog.com), Gary Petersen (myelomasurvival.com), Jack Aiello (well-known myeloma patient advocate) and Jenny Ahlstrom (www.myelomacrowd.org, www.mpatient.org.)

"Patients with terminal cancers cannot sit by as idle spectators, waiting patiently for the next big discovery or cure," says myeloma patient activist, Jenny Ahlstrom, and founder of the patient-driven CrowdCare Foundation and Myeloma Crowd Radio.

With a drop in NCI-funded research, alternative approaches are needed. "Although we have come a long way in improving outcomes for myeloma patients, we still need to do better, says Dr. Tricot. "Further progress will arise from excellent and diverse research initiatives supported via federal and private funds. It is therefore exciting to see a new funding mechanism like the Myeloma Crowd Research Initiative take shape at a time of reduced federal funding for research."

CIO, CTO & Developer Resources "I am delighted to work with an organization whose commitment is to further advances in our management of myeloma patients," says Dr. Fonseca. "Simply put, today's best is not good enough."

"Giving patients a seat at the table to drive new research is a new and exciting opportunity for the patient community. I'm excited to help myeloma patients and caregivers give input into what research is done--and how it's funded," says popular myeloma blogger and patient activist Pat Killingsworth. "Crowdfunding and the MCRI is a potential game-changer where new, exciting initiatives can be funded without the crippling limitations of the existing process," says Gary Petersen.

Building a connected community to drive outcomes is a key component of the complete solution to find a cure. "The Myeloma Crowd Research Initiative is an innovative effort to help improve research and therapy for patients with myeloma in the new era of connectivity," says Dr. Ghobrial.

The simple goal for the joint quest is a cure. "The Myeloma Crowd Research Initiative is an outstanding project devoted to fund research designed to ultimately establish a cure for myeloma. I am honored to be part of this effort," says Dr. Landgren and Dr. Raje echoes the sentiment. "This is a novel and exciting approach to funding research in multiple myeloma and I am honored to be a part of it."

About Myeloma Crowd/CrowdCare Foundation
The Myeloma Crowd is a division of the CrowdCare Foundation, a patient-driven 501(c)3 non-profit organization. The Myeloma Crowd provides patient education, advocacy and now research funding for multiple myeloma. Ahlstrom founded the CrowdCare Foundation, Myeloma Crowd and also hosts online radio interviews with top myeloma specialists worldwide to educate patients and promote clinical trial participation. www.myelomacrowd.org

To view the original version on PR Newswire, visit:http://www.prnewswire.com/news-releases/impatient-cancer-patients-help-drive-first-ever-crowdfunding-initiative-for-multiple-myeloma-research-300004356.html

SOURCE CrowdCare Foundation

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

Early Myeloma Diagnosis Can Save Your Life - Get TESTED

12/1/2014

During the last Cure Panel Broadcast featuring Dr. Gareth Morgan, he made a statement which was so enlightening. He said that major improvements in survival and life expectancy will only come if we can get early diagnosis and treat myeloma before it becomes too advanced or causes organ damage. He believes the fact that it takes 3 to 6 months, and more often 6 months, from first symptoms to diagnosis is a scandal. " To make real inroads in the myeloma we need to get it diagnosed early before we have organ involvement. We need to make family doctors and family practitioners more aware of the disease. They should do M spike and light chain tests on patients." He believes the future of Myeloma will be to get earlier diagnosis, safe treatments, chemo prevention strategy, regular screening for para protein, and early intervention. This is the future and should be what we are striving to achieve. The UK's NHS (National Health Service) data shows that late diagnosis and advanced disease result in 1 in 5 newly diagnosed die within 2 months of diagnosis. But with this knowledge, I ask why can't the future be now? Breast cancer and colon cancer screenings have become the standard of care and can Identify early disease before organ damage.

The logic is sound. For breast cancer, stages 0 and 1 have a 5 year survival rate of 98.5% and stage 4 is just 25%. For colon cancer, the 5 year survival for early stage disease is 89.8 percent vs.12.9% for late stage advanced disease. Estimated cost with and without insurance is hard to determine, but the average before insurance for a mammogram is around $450, and that of colorectal screening averages $1000. With insurance most of these costs will be covered. The cost of a test for myeloma, which would include the M spike and light chain tests, runs $355 for my tests at Mayo, and all costs are covered by Blue Cross and Blue Shield.

For all patients I have ever talked with, they all feel they had the disease for a long time prior to showing symptoms which sent them to a doctor. So like breast cancer and colorectal cancer, the only way to catch it early is to be tested. And for lack of a recommendation by the IMF, MMRF, LLS, or Medicare, I think all people over 55 years old should have the myeloma tests every 5 years. Early diagnosis will allow each person the time to become their own best advocate and find the myeloma specialist they want on their team, and how they want to have their disease treated. What you won't get is the big surprise of a collapse of the spine from advanced bone damage, or organ failure like end stage kidney failure, stroke, and heart disease, not to mention infections and uncontrolled bleeding. Check with your insurance company to find out if the tests are covered under your policy.

For those younger than 55, they too should be tested is they have any of the symptoms of myeloma. They include bone pain, bone breaks, excessive infections, fatigue, bleeding which is slow to stop, high blood pressure, confusion, or tingling in the hands and feet.

So until we have published guidelines, it will be the children and grandchildren who are computer savvy and will be able to recommend to father, mother, grandmother, or granddad to get the myeloma tests so they can continue to be the center of the family.

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

A fact on where your money is going, and few people ever really know!

33,561 auto deaths each year and we spend $24 billion($1500 per new car sold) on safety equipment or $715,115 per death

580,350 cancer deaths each year and the NCI funds $4.9 billion per year for research or $8,843 per death. Maybe we are underspending for cancer research and cure, ya think!

Multiple Myeloma Has A Champion! Tom Brokaw! Thank You, Thank You, THANK YOU!!

11/26/2014

First, everyone have a wonderful Thanksgiving. It is great to be thankful on Thanksgiving. Breast Cancer is thankful for Susan Komen, and Katie Couric has been the champion for colon cancer. The result being a significant reduction in deaths and early detection, which just may have been the biggest and most outstanding accomplishment. However, Multiple Myeloma has never had that person who could and would champion our cause. Now I am happy and thankful to say we have TOM BROKAW, our champion, our Hercules. He could have just hid his cancer like many do, or just stayed quiet and act the victim, but no, he has become a myeloma activist. It is not to say we don't have some very excellent people trying, doctors, IMF, MMRF, LLS, and the great group of patient advocates like, Mike Katz, Pat Killingworth, Jenny Ahlstrom, Nick van Dyk, and many, many more, but we just have not had the person who could catch the attention of the masses to really have an impact on awareness. It is not because we have not tried, but we just have not been able to get the visibility which might create the momentum to achieve awareness. The proof is in the results as published by the UK's National Health Service, where only 3% of the population have ever heard of myeloma. This translates in 1 in 5 newly diagnosed patients dying within the first 2 months of diagnosis, due to delayed diagnosis and advanced disease. That is 4400 dead each year, or a little over half the number killed from auto accidents for this age group of people.

In recent days, Tom Brokow has taken on a leadership role in helping to bring myeloma into the mainstream of thinking. He was just part of the MMRF annual Comedy fund raiser, and just recently provided an interview of his journey conducted by Dana Farber Cancer Institute. His observations were excellent and provided great incite into the disease, the impacts of the disease (in his case bone damage), and the risks inherent in treatment of the disease (infection and hospital stays). It also outlines the fact that Tom must have had the disease for some time prior to diagnosis, in that he had bone damage to the extent his vertebra collapsed. You can listen to Tom's interview if you CLICK HERE.

And it may not just be awareness that is required, because delayed diagnosis also happens to doctors who have been educated on Multiple Myeloma and its symptoms. ONJ or jaw bone disintegration is well know by orthodontists as an issue with Zometa and Myeloma, and they have been trained to work on it. But this does not mean they can not be victims of delayed diagnosis. A doctor sent me the following summary of his delayed diagnosis.

The Doctor provided the following about his two year journey from first symptoms to diagnosis, and is thankful to be alive.

This is a story about why you should listen to your wife or I am the luckiest guy in the world and I have several Guardian Angels.We all make a million choices every day from the smallest to the largest all may or may not be important. Think of the people that didn’t go to work for one reason or another on 9/11. I almost made a choice that cost me my life. In the fall of 2001 I was getting ready for bow season and went out to practice shooting. When I pulled the bow back I heard and felt something pop in my chest. That was the last arrow I ever shot!. I was being treated for asthma by my allergist and I had constant bronchitis. One night I reached for something and my arm went into spasm. My wife wanted me to find another doctor but I refused because he was a friend and most of the diagnosis of cartilage inflammation was done over the phone. It also made sense to me. I had pain in my back that was so bad I couldn't get out of bed unless I turned over on my stomach and just slid out of bed. I was given Celebrex and right away I felt better. In April of 2002 we went to Galena Il. to celebrate our 37Th. anniversary, and I couldn’t climb the stairs of the B&B. This time I got Vioxx. Still I refused to see anyone else. That summer we switched to Bextra for the pain and Nancy and I had a major argument over my medical care. About then I started to feel better and we dropped the issue. As winter came on I didn’t have enough strength to start the snowblower but my daughter could. In January I went on an 800 mile snowmobile trip in the U.P. and did OK. Then in March I went with a friend to Montana to snowmobile. I thought we were going to ride the Yellowstone trails. I was a good trail rider but had only a week of mountain riding experience. This is where the first Guardian Angel comes in. We started our first day on a cold and snowy morning. The snow was so bad you couldn’t see. So we dropped down into a valley where visibility was better. We stopped for lunch and my hands were cold even with gloves on. This was a first as my hands always stay warm riding. It was time to ride up the mountain and head back to town. The snow in the valley was very deep since it had been snowing 12 inches a night for over a week. If you wanted to stop without getting stuck you had to ride in a circle and stop on your tracks. I tried three times to get up the mountain and got buried each time. This took lots of effort and I was getting very tired. Our guide said to ride closer to the trees ,the snow would be firmer there. Off I went at 40 MPH, and wham a tree well had broken, the sled flipped over and I hit like a ton of bricks. My first thought was I had fractured my pelvis. Eventually I got out of the valley by walking in snow up to my chest and crawling up the mountain. This took one sentence to write and about two hours to do. I had a large bruise on my side but I was lucky to be alive. When I got home I called for an appointment to see what the damage was. I had a chest x-ray in November and passed an insurance physical. That x-ray must have shown no broken ribs or disease. That night I got the call we all dread , I had nine broken ribs and it looked like I had Multiple Myeloma. Unlike most people this was not the first time I had heard of MM. I had taken the Special Pathology of Bone as part of my orthodontic training. The orthodontist moves teeth but his medium is bone. I ran to get my 25 year old notes ( yep I’m a pack rat) and about lost it when I read what I had written all those years ago. I had 3-6 months to live. The notes were old so I got to the internet as fast as I could. Not much better, it said 2-4 years. As it turned out both were way off. Without the snowmobile accident I would have gone until I had kidney damage, bone fractures, or ended up in the emergency room with septic shock. That was miracle number one. I blindly started treatment the next week with surgery to place a port and to start a fanny pack with VAD chemo. I soon had pneumonia but overcame that, I started Zometa and promptly got osteonecrosis on both sides of my mandible. The Dex drove my blood sugar up and I soon became a Type Two Diabetic. I had had three rounds of chemo when I found out my insurance would not pay for my stem cell transplant where the local oncologist wanted me to go. They were not Myeloma specialist but general oncologist and were out of network. Things were looking pretty grim and any hope of living more than a few years faded. Here comes miracles 2&3. My next door neighbor was flying and the guy next to him was a doctor that worked for my insurance company. The neighbor told him about me. He said the insurance company would pay if I went to Indiana University Medical Center. IU was in network! I had hit the jackpot! The doctor there only treated Myeloma. I remember like it was yesterday when I first met Dr Abonour and his nurse Gina. Almost 12 years later I am still doing great. I had been very lucky, it had been almost two years since my first symptoms, and I had a low risk Myeloma or I would have never made it to diagnosis. I ended up with a Myeloma Specialist by accident. The combination of Celebrex, Vioxx, and Bextra would have put me into kidney failure if I had been a secretor. I was only the third Myeloma patient my internist had seen in forty years of practice. The moral to this story is if you have long term back or rib pain, fractures, constant bronchitis, fatigue,nausea or bruising please follow what your wife or husband says and see a doctor that knows about myeloma. If you are unlucky and there is any suspicion of Myeloma see a Myeloma Specialist. Myeloma Specialist are in all the large cancer centers like MD Anderson, Dana Farber, Mayo’s. U of Arkansas, and IU. Your family will thank you.

If a doctor takes two years to find out he has myeloma, how can we expect any better results when a typical patient shows symptoms. Nor can we expect the General Practitioner to do what most common diagnostic tests won't show in the early stages. Awareness is so important, but how should we focus this awareness to obtain earlier diagnosis? I will continue to pursue this question in the next blog post which will be about, "How Do We Obtain Early Diagnosis?"

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

LONDON COMES TO LITTLE ROCK - How To CURE Myeloma Patients By Dr. Gareth Morgan

11/20/2014

Dr. Gareth Morgan, the new Director of the Myeloma Program at UAMS Little Rock, was the featured speaker at the November 18th Cure Panel Broadcast and explained the Total Therapy approach to treatment and the science behind it. CLICK HERE to listen to the OUTSTANDING rebroadcast. UAMS is one of the premiere and world class Myeloma programs internationally and has data showing they can cure 60% of low risk patients.

What you soon recognize once you do some research is that Dr. Morgan is not just any Doctor. He was the head of the Myeloma Program at the largest comprehensive cancer institute in all of Europe(his bio follows), he is the Director of the Myeloma UK which is like our IMF, is internationally known and respected, and lived in one of the most cultured and beautiful cities in the world(London). So what could possibly tear him away from such a remarkable existence, uproot himself and move to Little Rock, AK, to a program which has been such a historic HOT TOPIC, both praised and loved by patients and doctors, yet harshly criticized and questioned as well?

What you find out is Dr. Morgan is all about the patient, the patient experience, and improving outcomes. And when I asked him what drew him to UAMS he responded by saying "I feel I made the right decision!" and for the following reasons.

- He believes it is an honor to be at UAMS. UAMS is respected internationally.

- Thinking creatively, he thinks it was a good decision for himself and for the program at MIRT

- He now has access to the large patient base, the outstanding and amazing infrastructure, the staff who look after all elements of the patient's care from arrival, and UAMS has a pastoral care approach to patients. UAMS will deliver game changing treatments for patients and take the myeloma care and treatment program to the next level.

Dr. Morgan goes on to explain myeloma biology, the success of the Total Therapy program, and the UAMS survival measurement accuracy.

Within Myeloma there is more than one cancer cell or one clone. Cells have different behavior and are not homogenous.   The challenge for cure is to kill every myeloma cell so there are none left to relapse. This is how the More Can Cure comes into play.   He would not use the term " More Can Cure" but believes a combination of drugs with different therapeutic actions kills more of these cells and therefore cure more patients. Also, that with time the program will phase to more targeted individualized therapy and depend less on high dose chemotherapy and use more of the monoclonal antibodies and immunotherapies to achieve cure. However, the current program has been so successful with an average life expectancy exceeding 15 years, they will not do away with what works until they are sure of the success of the new combinations. He looks to improve the cure rate by adding monoclonal antibodies to the front line treatment with an eye to eliminating one of the transplants without reducing the cure rate. He coined the term of TTT or Total Targeted Therapy.

Other takeaways from Dr. Morgan's presentations include:

- He has looked at the data for the Total Therapy program and finds that it has been audited by independent outside companies as well as the National Cancer Institute and the claims of long term survival and cure are valid.

- Quality of people he inherited at UAMS are skilled and dedicated personnel, and he could not be happier with the current staff.

- Quality of life is a timing tradeoff, where during treatment there are impacts, but it is then followed by a long period without any treatment and a high probability of cure, vs. the continual treatment and relapse cycle.

- Internationally the concepts of Total Therapy with induction, two transplants, consolidation, and maintenance are accepted and used extensively, and Dr. Morgan used them in the UK.   He is committed to clinical trials and is very excited about the monoclonal antibody trials.

- Another focus of the UAMS program will be in the area of high risk myeloma, where for this cohort of 15% of patients there has been little progress. Much like myeloma 15 years ago, high risk patient have a life expectancy of just two years and we must find a way to push that out and begin curing this group of patients.

- Dr. Morgan has made a commitment to get out in front of patients to spend time and energy to explain the UAMS program, its benefits, and outstanding results to the myeloma patient community. He has and will continue to let patients discover how the UAMS program is cutting edge, innovative, with a pastoral approach to patient treatment and care, uses a targeted approach to each patient's care, and is not a one size fits all program.

- Pat Killingsworth asked what kinds of treatments are available for relapse and refractory patients. Dr. Morgan believes the antibodies are a great option alone and in combination. He mentioned the use of T cells as another approach to treatment. He identified a Raz mutation which has been found and the use of a Raz inhibitor show response with heavily treated patients. These developments will be put into a formal program in near future. CLICK HERE to read a blog post by Pat on this subject.

- Nick asked about the implications of the improved survival of the TT4 standard arm, which was much better than that of the TT4lite arm. Dr. Morgan said these results highlighted that any reduction in the alkylating agents should be done with caution because the only difference between the two arms was the standard arm used more melphalan.   They may be able to do so in the future with the use of new antibodies and immunotherapies, but not at the cost of outcomes.

- Cindy asked if his recent article on the use of cyclical treatments would be getting into the treatment mix. She thought due to the heterogeneity of the disease this might make a lot of sense. Dr. Morgan said he thought so in the maintenance phase of treatment where different combinations of drugs used in maintenance would be cycled.

- With smoldering patients, they should be treated before organ damage. With a MGUS condition, there is no need for treatment, however with smoldering patients, he uses gene array to see who will progress in 1 to 2 years. They use a 4 gene signature, which will predict early onset of active disease. He would use an anti CD38 antibody for these patients.

- On the subject of awareness and delayed diagnosis, he believes the fact that it takes 3 to 6 months and more often 6 months from first symptoms to diagnosis is a bit of a scandal.   To make real inroads in the myeloma we need to get it diagnosed early before we have organ involvement. We need to make family doctors and family practitioners more aware of the disease. They should do M spike and light chain tests on patients. This makes a lot of sense to Dr. Morgan. It is really tragic when patients develop renal failure when awareness of myeloma by a General Practitioner might have allowed the patient to get a consult or treatment from a myeloma specialist. A myeloma specialist is critical to a patient's long term care and survival. It is a disease that does not come on over night but takes years in the making. Patient organizations can make a difference.   Like with Smoldering, there might be a non toxic and safe treatment for MGUS which would be a chemo prevention program. He believe the future of Myeloma will be to get earlier diagnosis, safe treatments, chemo prevention strategy, regulate screening for para protein, and early intervention. This is the future but should be what we are striving to achieve.

There is much more good information, so I would recommend you take the time to listen to the entire program. You will learn so much and understand the current UAMS program, and how it will change under Dr. Morgan's leadership.

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

Gareth Morgan, MD, PhD, FRCP, FRCPath

Dr. Gareth Morgan is professor of medicine and pathology and director of the Myeloma Institute for Research and Therapy at the University of Arkansas for Medical Sciences (UAMS). He is also the deputy director of the Winthrop P. Rockefeller Cancer Institute at UAMS. He is an internationally recognized scientist and clinician in the field of the molecular genetics in blood cell cancers, in particular, multiple myeloma. He came to UAMS from The Royal Marsden Institute NHS Foundation Trust and the Institute of Cancer Research in London, Europe’s largest comprehensive cancer institute, where he was a professor of hematology and director of the Centre for Myeloma Research.

Dr. Morgan received his doctorate on the genetics of leukemia from the University of London in 1991 and his MD in 1981 from the Welsh National School of Medicine. He is a director of Myeloma UK, a respected UK patient organization, as well as a member of the Scientific Board of the International Myeloma Foundation. He is the founding director of the European Myeloma Network.

Dr. Morgan is doing influential work in characterizing the myeloma genome, defining specific subsets of the disease that have prognostic importance, and developing personalized therapeutic strategies targeted to each subtype. He also is engaged in advanced research in molecular diagnostics, drug development and clinical trials. Dr. Morgan has authored more than 450 articles appearing in leading peer-reviewed journals, including New England Journal of Medicine, Blood, Journal of Clinical Oncology, Leukemia, Lancet-Oncology, and Clinical Cancer Research.

He is a member of the British Society of Haematology, the American Society of Hematology, the American Association for Cancer Research, the Royal College of Physicians, UK, and the Royal College of Pathologists, UK.

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How To Raise Myeloma Awareness And SAVE LIFE! Thank And Praise Our Remarkable Mambo For Myeloma Dancers!!

11/12/2014

As most myeloma patients have come to understand, few people know about myeloma, it is often misdiagnosed, and improving awareness can and will SAVE LIFE and help fund research. We have few programs to improve awareness with Mambo for Myeloma one of the grassroots initiatives which either could take off and make a huge difference like the ALS ice bucket challenge or just fade away. I look at these remarkable people and their so thoughtful, funny, and caring performances and my belief is that WE CAN MAKE A DIFFERENCE. You can view them if you CLICK HERE.

So what do these people get in return for their support and commitment to raise awareness and fund research. People have watched them, but few if any have commented. I thank them and comment, Dana thanks them and comments, and the FEEBEE crew are remarkable but there should be hundreds of thank you comments. This is what will motivate the next group to start a dance, because it is just human nature. If you open a door for someone, you would hope for a thank you, If you let someone pull out in heavy traffic you expect a wave as thank you, and wouldn't you hope for a thank you if you were trying to help SAVE LIFE in the multiple myeloma community? And if your kind action is not acknowledged, how do you feel?

So I ask that we as myeloma patients help to provide the positive reinforcement which might just tip this program into a huge win for the multiple myeloma patient community. The LEAST we can do is to thank and praise these remarkable people in the Facebook comments!!! Let's show them we do appreciate their efforts. Who would have ever thought thousands of people, movie stars, and presidents would dump freezing cold water on their heads and raise over $100 million dollars for ALS, and ALS affects just one forth as many people as myeloma. This effort is being supported by the IMF (International Myeloma Foundation), the MMRF (Multiple Myeloma Research Foundation), CrowdCare Foundation - The Multiple Myeloma Fund, and MMORE. If all of these organizations see the benefit, as Patients the least we can do is provide positive encouragement to those that take the time and energy to try to help SAVE OUR LIVES.

You can participate in the Myeloma Mambo Challenge if you CLICK HERE. Here’s how it works:

Have you, friends or family take videos of their dance moves in honor of myeloma research – any kind of dance move works!
Mention that it is for Multiple Myeloma (we don’t want it confused with melanoma)
Challenge other friends to do the same
Upload your video to You Tube and tag it as Mambo for Multiple Myeloma, then share it on the Mambo for Multiple Myeloma Facebook Page
Donate to one of the great myeloma organizations below

There is no “right” dance move and interpretive dance is welcome. Do it as a group, go solo or take a dance move selfie and post. Can’t do a video? No problem! Just take a dance move photo and post it to the Mambo for Multiple Myeloma Facebook Page. Want to help spread the word? Help raise myeloma awareness by “liking” the page and sharing it. https://www.facebook.com/pages/MAMBO-for-MYELOMA-Awarenesss-DANCE-Challenge-Starts-HERE/1458033874458925?sk=timeline. You can find all “Mambo for Myeloma” You Tube videos here.

DO WE SEE A MAMBO FLASH MOB FOR MULTIPLE MYELOMA AWARENESS IN OUR FUTURE ??

Do your dance today and choose one of the MULTIPLE MYELOMA research foundations/organizations who are trying to find the cure!

THE CROWDCARE FOUNDATION – THE MULTIPLE MYELOMA FUND

THE INTERNATIONAL MYELOMA FOUNDATION (IMF)
The IMF InfoLine 800-452-CURE (2873)

MULTIPLE MYELOMA RESEARCH FOUNDATION (MMRF)
MMRF Patient Support Center (866) 603-6628
MMRF General Information & Donations (203) 229-0464

MMORE FOUNDATION

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

The British Are Coming! The British Are Coming? Dr. Gareth Morgan Was The Featured Speaker On The November 18th Cure Panel and Discussed "UAMS Treatment of MORE CAN CURE"

11/6/2014

Myeloma Cure, Once more unto the breach, dear friends, once more!

The British Are Coming! Dr. Gareth Morgan became the new Director of the Myeloma Program at UAMS in Little Rock in July of 2014, and he was the featured speaker at the November 18th Cure Panel Broadcast. CLICK HERE to listen to the rebroadcast. This is one that you can not afford to miss. Dr. Morgan came to UAMS from The Royal Marsden NHS Foundation Trust and The Institute of Cancer Research in London, where he was a Professor of Haematology and Director of the Centre for Myeloma Research. Dr. Bart Barlogie was the the founder of the UAMS program, and he has led the program to become one of the best programs in the world with exceptional survival rates. The Total Therapy protocol for myeloma treatment was developed at UAMS and is based on using a " hit the myeloma hard with up front therapy" when the disease has not had an opportunity to develop resistance. This MORE CAN CURE approach will be our topic, and has and will continue to be a HOT TOPIC!

Some recent on line publications by Dr. Morgan which may be of interest are the following:

- Dr. Morgan chaired a review of the Myeloma 2014 meeting in Boston where top myeloma specialists discussed: "How Do We Understand and Pursue Cure for Myeloma?" To view CLICK HERE.

- Dr. Morgan discusses the biology of Multiple Myeloma and its implications for successful treatment protocols. To read this article CLICK HERE.

For all people who know of the current UAMS program, some key questions instantly come to mind.

How will the program change under Dr. Morgan's leadership?

UAMS has conducted clinical trials, however they were usually UAMS only trials. Will UAMS continue this strategy or will they be involved in the new monoclonal antibody clinical trials, etc?

What is Dr. Barlogie's new role in the UAMS structure?

These are just a few of the questions which come to mind, I expect the Cure Panel and the listeners will have a lot more questions and concerns. Please email [email protected] with your questions. UAMS is one of the premiere and world class Myeloma programs in the world. How will this leadership change affect the current program and the future direction?

You will find more information on multiple myeloma if you go to the web site www.myelomasurvival.com or follow me on twitter @grpetersen1. God bless all who have to be on this journey/ [email protected]