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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

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

12/15/2014

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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

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

12/10/2014

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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

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

12/4/2014

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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

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Early Myeloma Diagnosis Can Save Your Life - Get TESTED

12/1/2014

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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!

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

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

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

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

Early Myeloma Diagnosis Can Save Your Life - Get TESTED

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