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Myeloma Patient Advocates In Action. Advocating For You!

1/25/2016

The Multiple Myeloma Community has always had a unique synergistic combination of myeloma specialists, researchers, patient advocates, myeloma institutions(IMF, MMRF, MCRI, LLS and MMORE), and pharmaceutical companies. Now more than ever patient and patient advocates have been asked to contribute their ideas, concerns, and recommendations to improve the myeloma patient experience and outcomes. I, Gary Petersen, the editor of myelomasurvival.com am honored to be considered part of this amazing group. Some of the most recent efforts follow.

CONQUER The Patient Voice

Article - Opportunities For Improving The Care Of Patients With Multiple Myeloma
Jack Aiello, Cheryl Boyce, Yelak Biru, Cynthia Chmielewski, and Gary Petersen

A roundtable discussion of patients with multiple myeloma was held in Boston on July 14, 2015, with the goal of gaining insights into the challenges and gaps that patients and their loved ones are facing.This article summarizes the views of the patients regarding their experiences with current treatments and other issues related to cancer care. The participating patients were Jack Aiello, Cheryl Boyce, Yelak Biru, Cynthia Chmielewski, and Gary Petersen. They have all had multiple myeloma for many years and have expressed their perspectives based on their individual struggles with the disease. In addition, as leaders of their communities of patients with multiple myeloma, they have gained insights into critical issues that patients with multiple myeloma face from diagnosis and throughout their survivorship. You can read the article if you CLICK HERE!

The Myeloma Crowd Research Initiative

The MCRI was started by Jennifer Ahlstrom, a myeloma patient and advocate, just as the IMF and the MMRF were started by a patient advocate. The premise for this proposal is high risk myeloma is undeserved and most myeloma in the end stage is by definition high risk. It is felt if you can find the cure for high risk myeloma you have found the cure for all myeloma. Unfortunately, the most likely cure for myeloma will be through the use of your own immune system to fight and kill the cancer cells. This is not a drug but a process, and as a result may not have the resources devoted to it like a drug would, therefore alternate forms of financing are required. As part of this program, patient advocates Jenny Ahlstrom, Lizzy Smith, Pat Killingsworth, Cynthia Chmielewski, Jack Aiello, and Gary Petersen are members of the MCRI Patient Advisory Board. You can find out more about this outstanding initiative if you CLICK HERE.

Myeloma Crowd TV

The first episode of Myeloma Crowd TV was broadcasting with Jenny Ahlstrom anchor. The first episode centers on the great news which was presented at this years ASH (American Society of Hematology) which was just this last December. Jenny puts it in a very patient friendly form. View the first episode below.

I have often said the two most important elements of a successful myeloma prognosis is to have a myeloma specialist on your team and to become your own best advocate. Recently, I was interviewed by Andrew Schorr of Patient Power and he gave me the opportunity to explain how very important it is to have a myeloma specialist on your treatment team. With the speed of new drug development and approval, and the breakneck pace of new treatment approaches, a specialist has become an absolute necessity. A listing of over 200 specialists can be found if you CLICK HERE. You can view the interview below.

Over two years ago prior to the resent flood of new myeloma drugs and treatments, Dr. Noopur Raje, a world renowned myeloma specialist and the Director of the Center For Multiple Myeloma at the Massachusetts General Hospital provided a similar plea "Why Should Myeloma Patients Visit A Specialty Center?" You can view this call to have a myeloma specialist on your team if you CLICK HERE.

On the second point of being your own best advocate Cynthia Chmielewski recently gave an excellent summary of the reasons and importance of being your own best advocate in a MCRI video and you can view it below.

And heartfelt thank you to all of the myeloma advocates and all they do for the myeloma patient community. You know who you are. You are the Jim's, Lori's, Nick's, Matt's, Kimberly's, Dana's, and Danny's of the world.

For more information on multiple myeloma CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1

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Is The CANCER MOONSHOT The Only Solution To An Inadequate And Outdated System?

1/17/2016

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First we need to look at the current system and decide if it works well or not. Based on a recent analysis by Tufts University, the cost of a new drug is 2.6 billion dollars. MedicineNet.com reports it takes 12 years for an experimental drug to travel from the laboratory to your medicine cabinet. That is, if it makes it, and only 1 in 5000 drugs ever make it. So it is safe to say it takes a long time to get a drug to market and at a tremendous cost. So lets follow the money. The NCI or National Cancer Institute has a budget of $5 billion for all cancers. In 2014, 9 new cancer drugs were approved at an estimated cost of $23.4 billion. This is a discussion about the development cost of drugs and not about the pricing of these drugs. I will leave that to it's own blog post. It can therefore be argued the vast majority of funding comes from the drug companies, so without drug companies, their resources and desire for profit, we would have little to no progress in new drug development. Organizations like the American Cancer Society try to support research and provide $144 million each year, but this is just a drop in the bucket and the majority comes from the drug companies. So given our system we depend on the big pharma to do most of the heavy lifting. Given the profit motive, one can only expect the money will go where the volume is, and that would be breast cancer, prostate cancer, lung cancer and colon and rectal cancers. That leaves little for the other more than 100 other cancers. Lets look at one example that is close to my heart and that is multiple myeloma.

Multiple Myeloma, like brain cancer is considered rare and received just $45 million in NCI funding in 2014, yet in 2015 four new myeoma drugs entered the market. So why so much development and pharma funding for myeloma. This $10.4 billion in new drug development funding for myeloma is too good to be true. What magic does myeloma have? I think it has focus from a close knit group of exceptionally talented myeloma specialists (International Myeloma Foundation), a business model for drug funding and development (Multiple Myeloma Research Foundation), an active group of myeloma advocates, and drug companies who have found a future in myeloma treatment and drug development. Some of this experience may be transferable to other cancers in the moonshot, but even this remarkable group and its methods of handing myeloma has limitations, because the new best chance for cure comes from immunotherapies or using your own immune system to fight cancer. This is not a drug, but a process in many cases your own T cells, Mil's(marrow infiltrating lymphocytes) or dendritic cells removed, modified, and reintroduced back into the patient. These processes can be patented, but who will be the investors of a process which may not be a part of the drug companies business model. The MCRI or Myeloma Crowd Research Initiative is trying to fill that gap, however they can only fund a very few best in class projects for myeloma, and to have a chance to fund projects like this for all cancers it may just take a MOONSHOT.

There were many paybacks with the first MOONSHOT. It cost us $170 billion to put a man on the moon in today's dollars. We now spend just $5 billion dollars each year for cancer research, but this seems so terribly inadequate for the 589,000 patients in the USA who died from cancer in 2015, or the suffering of those living with cancer and their families to the treasure we spend each year for cancer treatment. This cost is $120 billion each year on cancer treatment, and with a cure these costs could be greatly reduced.

If anyone thinks this will not impact them, they are wrong because a recent study in the United Kingdom has found that 1 out of every 2 people will get cancer in their lifetime.
I hope and pray the initiative proposed by Vice President Biden and recently approved by the President will have the same dedication, emphasis, focus, and funding as the first moonshot to FINALLY cure cancer. To find out more about this remarkable MOONSHOT initiative by Vice President Biden CLICK HERE or CLICK HERE. What a wonderful way for a father to honor his son. From all Cancer Patients and their families, thank you Joe. Go Joe, Go. SOS!!

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Preventing Multiple Myeloma From Progressing: The Dana-Farber Study for Precursor Blood Cancers - by Jenny Ahlstrom of MyelomaCrowd.org

1/13/2016

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A Preface from Gary Petersen - If you find myeloma in stage one you will live three times longer than if it is found in stage 3. In breast cancer if you can find it in the DCIS prestaged form, you have a nearly 100% chance of cure vs. just 15% 5 year survival if found in stage 4. Myeloma has a 5 year survival of 46.6%, and is usually found in a later stage, so the sky is the limit if it is found in the early MGUS or Smoldering phase of myeloma. Dr. Morgan of UAMS believes early screening and diagnosis is the future of myeloma care and treatment, and Dr. Jesus San Miguel Professor of Hematology University Salamanca, Spain has completed some excellent work in the treatment of high risk smoldering myeloma. Dr. Ghobrial's work just could be the breakthrough which results in early treatment and cure. How great would that be? Thank You Dana Holmes and your group for championing this work. Dr. Ghobrial's explains it best in the following YouTube video.

Dana-Farber Cancer Institute is taking a fascinating approach to multiple myeloma. They want to shut it down before it even gets started. In 2014 they began a new initiative called the Center for Prevention of Progression of Blood Cancers (CPOP). At this center, they look at early conditions like MGUS and smoldering myeloma to learn why some people progress to myeloma and others don’t. Stopping myeloma before it grows legs could potentially cure thousands.

The project is a tissue bank that follows patients from the beginning of their diagnosis at early stages. They aim to develop targeted therapeutic agents that can eliminate the early clones of disease. Some of the blood cancer precursor conditions being studied as part of this protocol are monoclonal gammopathy of undetermined significance (MGUS), Smoldering Multiple Myeloma (SMM) or Smoldering Waldenström Macroglobulinemia, Early Myelodysplastic Syndrome (MDS), Monoclonal B-Cell Lymphocytosis, and Myeloproliferative Neoplasms (MPN). With a large database, they will be able to better understand who will progress and who will not, and what treatments may be the best for which patients depending on their molecular profiles. Dr. Irene Ghobrial, MD, PhD explains more about the program on Myeloma Crowd Radio.

Dana Holmes is a smoldering myeloma patient and is a strong patient advocate, creating a Smoldering Myeloma Facebook group as well as specific initiatives, like the Mambo for Myeloma. She is an enthusiastic participant in this program. Dana says:

"Many of us with either an MGUS or Smoldering Myeloma diagnosis are under close monitoring and nothing else. The early precursor stages of myeloma do not include treatment as a standard of care. There are many reasons for this, primarily, the potential toxicity of the standard of care anti-myeloma treatment regimes. This diagnosis really does cast you into a trifecta role of “watchful waiting with worry.” Many of us ask “what exactly are we waiting for?” and feel defenseless. Yes, there are indeed early treatment clinical trials available for those with high risk smoldering myeloma but you do need to meet very specific criteria to be eligible. And for those of us who don’t qualify, we get to just watch, wait and worry. I have been told that worry is useless and serves no purpose in the bigger picture of actually being diagnosed with myeloma. Although I fully understand this and agree in a practical sense, it is relative and nevertheless, the worry remains.

Becoming an informed patient during the precursor stages is immensely helpful. Being under the care of a top notch Multiple Myeloma Expert is another way to dispel more of the worry.

BUT, DOING something which will empower you takes it to another level! Many of us wonder if they are or have been studying Smoldering Myeloma and MGUS prospectively and the answer is YES !

We can now join the P-Crowd Study at the Dana Farber Cancer Institute Blood Cancer Prevention of Progression Clinic (BCPC) and become part of the future solution! It is currently open to patients in the U.S.

Many of the members in both my SMM and MGUS Facebook groups are already participating. The PCrowd Study is a prospective study trying to unravel the unknown of why some of those with the precursor stages of MGUS and smoldering myeloma are more likely to progress to active disease than others. The goal would be to someday find a way to prevent actual progression. It is a an easy study to participate in, we are asked to send in samples of either our serum or bone marrow biopsies.

This is a GREAT way to help make a difference in understanding SMM and MGUS better, a biopsy tissue sample or a blood sample is all it takes. I have “donated” both. This honestly could not be an easier process to participate in what will likely produce invaluable data for the advancement of unraveling the mystery of multiple myeloma in the precursor stages.

It is so simple, you collect the samples during your normally scheduled lab tests and appointments, and mail the samples to the Clinic in Boston in a prepaid express envelope! It is just so easy to participate and enroll BUT so very important to help move research forward. These brilliant researchers need OUR help and participation, I know I want them to be able to unravel this confounding puzzle. Think of it as your chance to make a real difference while you watch and wait…and of course worry! Carpe Diem !!"

To be part of this first-of-its-kind study, click here. To learn about study details, click here.

For more information on multiple myeloma CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1

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Myeloma Patient Advocates In Action. Advocating For You!

Is The CANCER MOONSHOT The Only Solution To An Inadequate And Outdated System?

Preventing Multiple Myeloma From Progressing: The Dana-Farber Study for Precursor Blood Cancers - by Jenny Ahlstrom of MyelomaCrowd.org

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