With new treatments transforming multiple myeloma into a chronic condition and additional therapies on the horizon, some experts believe a cure is within view.
Dana Davis, a 56-year-old school administrator in suburban Atlanta, remembers the rib pain first.
“I had an excuse for everything,” Davis says with a laugh. “But finally, my wife said I couldn’t ignore it any longer. She insisted that I go to the doctor. Pretty quickly, they found that I had anemia. Then they diagnosed multiple myeloma.”
That was 15 years ago. Davis has already survived three times longer than patients with even the best prognosis could have expected in the 20th century. The father of a son and two daughters when he was diagnosed, he has been able to watch those children grow up, take in a foster son, who is now 11, and see his first grandchild born.
And Davis is now part of a clinical trial of a targeted monoclonal antibody, daratumumab, that researchers hope will be a game changer in the treatment of myeloma. Even more amazing, Davis’ story is becoming more and more common.
A multiple myeloma diagnosis used to mean that a patient could only expect to survive three to five years — with only chemotherapy agents available for treatment. Today, that landscape has changed so much that it’s almost unrecognizable, with average survival nearly tripled and additional advances on the horizon with a sophisticated array of therapeutic options.
Doctors are trying established drugs in new combinations, doses and formulations that seem to cut down on the side effects of treatment, and also to lengthen stretches of progression-free survival (PFS). Some drugs in the clinical trial pipeline enlist the body’s own immune system to fight the disease, while others target cells with specific genetic mutations, or never-before-targeted systems that control cell processes. The fact that oral drugs are in development means that patients don’t have to travel to an infusion center every few weeks to keep their cancer under control.
Multiple myeloma remains an incurable disease, but it is becoming more manageable. Doctors are beginning to talk of it as a “chronic disease.” Some are optimistic enough to even say that a cure may be possible.
“It’s a massive convergence of our understanding of biology, the technology becoming available to understand myeloma cells and how they respond, the genetic subtypes of myeloma, the ability to engage both the patient community and researcher, to transfer data and information,” says Walter Capone, president and CEO of the Multiple Myeloma Research Foundation. “It’s truly a renaissance in our ability to make treatment of myeloma more precise and accelerate breakthroughs for patients.”
Approximately 22,000 Americans receive a multiple myeloma diagnosis each year. Myeloma is the second most common blood cancer, after lymphoma. It tends to strike African-Americans more often, and those older than 65.
Myeloma starts in the plasma cells of the bone marrow, white blood cells that, when healthy, are specialized immune cells, specifically B-cell lymphocytes that make antibodies. As the myeloma kindles, the plasma cells stop doing what they’re supposed to do and start making large amounts of an abnormal, non-functional antibody called “M protein.” These proteins and cells can clump together, forming hole-like cysts in the bone. If more than one cyst has formed, the diagnosis is “multiple” myeloma. M proteins and other substances made by myeloma cells also can etch away bone tissue, causing pain and breaks. They may thicken the blood, interfering with the normal function of kidneys, bone marrow, nerves and the immune system. And they can lead to high levels of blood calcium, causing dehydration and kidney problems or failure, or make patients susceptible to infection.
Myeloma is expensive. The incidence of lung cancer is 11 times greater than the incidence of multiple myeloma, but the annual costs associated with multiple myeloma are $100-plus million more than the costs associated with patients with lung cancer that has spread to the bones. The costs of the new drugs for a single patient range from $98,000 to $276,000 per year.
From Standard Treatment to New Territory
In recent years, the standard treatment has been a course of traditional, high-dose chemotherapy drugs like melphalan or cyclophosphamide, considered an “induction” phase of treatment meant to induce remission of the cancer prior to a stem cell transplant. Next, the patient receives a stem cell transplant. This grueling, months-long procedure replaces the diseased bone marrow with healthy marrow from a donor. The side effects of myeloma treatment can be harrowing: drops in blood counts, crushing fatigue, diarrhea, severe bone pain, relentless infections, nausea, heart damage.
Much More HERE
Showing posts with label Multiple Myeloma Research Foundation. Show all posts
Showing posts with label Multiple Myeloma Research Foundation. Show all posts
Sunday, October 18, 2015
Tuesday, October 7, 2014
Precious Cat Litter, Multiple Myeloma Research Foundation Team Up to Dust Cancer
Precious Cat Litter and the Multiple Myeloma Research Foundation (MMRF) have partnered on a campaign to raise awareness and find a cure for multiple myeloma, a rare form of blood cancer. Kathy Elsey, cofounder of the Englewood, Colo.-based Precious Cat Litter, was diagnosed with the disease in 2009. Since then, she and her husband, Dr. Bruce Elsey, have donated nearly $7 million to the Norwalk, Conn.-based organization.
"This is an opportunity for us to raise awareness for an organization that is making great strides toward finding a cure and advancing treatments for multiple myeloma,” said Dr. Elsey, cofounder of Precious Cat Products.
The Multiple Myeloma Research Foundation, established in 1998 by twin sisters Karen Andrews and Kathy Giusti after Kathy’s multiple myeloma diagnosis, aims to relentlessly pursue innovative means that accelerate the development of next-generation multiple myeloma treatments to extend the lives of patients and lead to a cure.
The campaign, #CatsAgainstCancer, spans Facebook, Twitter and Instagram using the Photala photo sharing platform to enable users to share their individual experiences and support the campaign’s mission.
As part of the campaign, users can download a coupon from the campaign landing page that allows them to save $3 on their next purchase of a 40-pound bag of Precious Cat Ultra Litter. For every $3 saved, Precious Cat will donate $3 to MMRF.
To find out more about the campaign and how you can participate, visit /redirect.aspx?location=http%3a%2f%2fwww.preciouscat.com%2fleave-cancer-in-the-dust%2f
LINK
"This is an opportunity for us to raise awareness for an organization that is making great strides toward finding a cure and advancing treatments for multiple myeloma,” said Dr. Elsey, cofounder of Precious Cat Products.
The campaign, #CatsAgainstCancer, spans Facebook, Twitter and Instagram using the Photala photo sharing platform to enable users to share their individual experiences and support the campaign’s mission.
As part of the campaign, users can download a coupon from the campaign landing page that allows them to save $3 on their next purchase of a 40-pound bag of Precious Cat Ultra Litter. For every $3 saved, Precious Cat will donate $3 to MMRF.
To find out more about the campaign and how you can participate, visit /redirect.aspx?location=http%3a%2f%2fwww.preciouscat.com%2fleave-cancer-in-the-dust%2f
LINK
Monday, July 22, 2013
Fighting for Her Life: MMRF CEO Creates Launch Pad for Multiple Myeloma Treatment
At 37 years old, Kathy Giusti was handed what amounted to a death sentence when she was diagnosed with multiple myeloma: A rare, fatal blood cancer.
Her doctors told her she had only three years to live, and with no treatments available, and not a single drug in the pipeline, they told her to prepare for the last years of her life.
That was nearly two decades ago.
Fighting for Survival
After digesting the shock and sadness of her diagnosis, Giusti decided she wasn’t going to let myeloma get the best of her, and she settled in for the fight of her life.
“Having a one-year old daughter at home – when I wanted to pull the covers over my head, I would hear the pitter patter of little feet, and I would think to myself, ‘No. No, I’m not going to do that. I’m going to fight to live as long as I can and see as many moments as I can with her,’” Giusti said.
She started the Multiple Myeloma Research Foundation in 1998 as a way to give herself – and others fighting the same fight – a glimmer of hope.
Armed with a business degree from Harvard, a high-powered career in the pharmaceutical industry and a background in medicine, she set out to find some kind of treatment that would give her more time for her daughter – at least long enough that her daughter would remember her mother.
“My dream was to jump-start enough research so that good things would happen to keep me living long enough to allow Nichole to remember me. When I started, it was a little bit selfish, but once I started it, I kept living and seeing the next challenge,” she said.
Giusti attributes the foundation’s success to her disease. She said being a cancer patient ignites a bigger spark to drive research and drug development.
“What happens when you are a patient running an organization like this, and you talk to other patients every day who have relapsed and run out of options, you have tremendous urgency to help save their lives,” she said.
Fixing a Broken Health-Care System
After receiving her diagnosis and vowing to do something to help those suffering with the same prognosis, Giusti faced one of her biggest challenges: Getting her foundation off the ground. To do it, she tapped into her Harvard Business School connections, and her years of experience in the private sector, working for companies like Merck (MRK), Gillette, and G.D. Searle & Co. She worked with a team at Harvard to write a business plan for the foundation that focused on how she wanted to move into the world of research and drug development – a unique idea in 1998 when many foundations focused instead on patient advocacy, lobbying, and support groups.
But moving into that realm of the non-profit world wasn’t easy.
“The problem is the academic system where you have to ‘publish or perish,’” she said. “Incentives aren’t aligned at all. It’s not anyone’s fault, it’s just built this way. What we did was create our own model and laid it on top of this broken system and that inspired a community to work with us and that’s been our success.”
She said it’s a matter of identifying roles for all parties involved, from the doctors, patients and scientists, to the pharmaceutical companies and the Food and Drug Administration.
But it’s not all just a matter of writing a compelling business plan and gathering a team of experts. Giusti said money is still what matters.
“The challenge is that 90% of non-profits never raise more than one million dollars. The secret is getting people to change behavior. You support people who write good business plans and identify the best partners, but you also have to have the funding…young scientists are out there wanting to do the right thing, and we’re funding them to come here. That’s what’s making a difference.”
MMRF has raised more than $225 million dollars and with it, created six FDA-approved drugs to fight multiple myeloma, with 25 more in the pipeline. Not only that, but the prognosis isn’t quite as grim for those diagnosed with the cancer thanks to recent medical advances. Patients are now given up to eight years to live instead of just three, and have the opportunity to fight with the drugs MMRF has helped create.
Inspiration for Future Progress
Though she’s managed to defy the odds for nearly two decades, Giusti knows myeloma will one day become too much for her to fight.
Despite her fate, she stays optimistic about her future, her family’s future, and the future of the MMRF.
In the short-term, Giusti said she believes it’s going to be the high quality data – live tissue banks, blood banks, electronic medical records, and data from myeloma patients – that will be the key to accelerating a cure.
“This whole field of where we’re pushing: Big data, open access, intellectual property rights, that was my dream and I really wanted to launch it and it needs a champion – a patient – saying it was no one’s fault but (instead caused by) not sharing data. The system is insanely broken, and it’s stifling the ability to find cures quickly,” she said.
The technology, she said, is now working in favor of a cure. And she said she’s proud MMRF is leading that charge.
In the long-term, whether she’s there to lead her foundation or not, Giusti said her ultimate goal is to find a cure for multiple myeloma and facilitate a transfer of knowledge.
“We have to take what we’ve learned and use it go across other forms of cancer,” she said. “And there are two ways to do that: Identify targets, new drugs that can be used for myeloma but also in other cancers because the drugs won’t be organ-specific anymore.”
For others who are fighting the same fight, Giusti said you don’t have to have a background in business and medicine to help eliminate the disease. She suggests finding a foundation to work with to help aid in the research and development processes – but that doesn’t mean you have to lead from the top.
“I think doing something (about the disease) makes you feel so much more empowered as a patient and gives you a lot more energy to fight your disease. Knowledge is power in understanding new therapies and treatments for your disease. People like to be in denial, but the more you learn, the better off you’ll be,” she said.
LINK
Her doctors told her she had only three years to live, and with no treatments available, and not a single drug in the pipeline, they told her to prepare for the last years of her life.
That was nearly two decades ago.
Fighting for Survival
After digesting the shock and sadness of her diagnosis, Giusti decided she wasn’t going to let myeloma get the best of her, and she settled in for the fight of her life.
“Having a one-year old daughter at home – when I wanted to pull the covers over my head, I would hear the pitter patter of little feet, and I would think to myself, ‘No. No, I’m not going to do that. I’m going to fight to live as long as I can and see as many moments as I can with her,’” Giusti said.
She started the Multiple Myeloma Research Foundation in 1998 as a way to give herself – and others fighting the same fight – a glimmer of hope.
Armed with a business degree from Harvard, a high-powered career in the pharmaceutical industry and a background in medicine, she set out to find some kind of treatment that would give her more time for her daughter – at least long enough that her daughter would remember her mother.
“My dream was to jump-start enough research so that good things would happen to keep me living long enough to allow Nichole to remember me. When I started, it was a little bit selfish, but once I started it, I kept living and seeing the next challenge,” she said.
Giusti attributes the foundation’s success to her disease. She said being a cancer patient ignites a bigger spark to drive research and drug development.
“What happens when you are a patient running an organization like this, and you talk to other patients every day who have relapsed and run out of options, you have tremendous urgency to help save their lives,” she said.
Fixing a Broken Health-Care System
After receiving her diagnosis and vowing to do something to help those suffering with the same prognosis, Giusti faced one of her biggest challenges: Getting her foundation off the ground. To do it, she tapped into her Harvard Business School connections, and her years of experience in the private sector, working for companies like Merck (MRK), Gillette, and G.D. Searle & Co. She worked with a team at Harvard to write a business plan for the foundation that focused on how she wanted to move into the world of research and drug development – a unique idea in 1998 when many foundations focused instead on patient advocacy, lobbying, and support groups.
But moving into that realm of the non-profit world wasn’t easy.
“The problem is the academic system where you have to ‘publish or perish,’” she said. “Incentives aren’t aligned at all. It’s not anyone’s fault, it’s just built this way. What we did was create our own model and laid it on top of this broken system and that inspired a community to work with us and that’s been our success.”
She said it’s a matter of identifying roles for all parties involved, from the doctors, patients and scientists, to the pharmaceutical companies and the Food and Drug Administration.
But it’s not all just a matter of writing a compelling business plan and gathering a team of experts. Giusti said money is still what matters.
“The challenge is that 90% of non-profits never raise more than one million dollars. The secret is getting people to change behavior. You support people who write good business plans and identify the best partners, but you also have to have the funding…young scientists are out there wanting to do the right thing, and we’re funding them to come here. That’s what’s making a difference.”
MMRF has raised more than $225 million dollars and with it, created six FDA-approved drugs to fight multiple myeloma, with 25 more in the pipeline. Not only that, but the prognosis isn’t quite as grim for those diagnosed with the cancer thanks to recent medical advances. Patients are now given up to eight years to live instead of just three, and have the opportunity to fight with the drugs MMRF has helped create.
Inspiration for Future Progress
Though she’s managed to defy the odds for nearly two decades, Giusti knows myeloma will one day become too much for her to fight.
Despite her fate, she stays optimistic about her future, her family’s future, and the future of the MMRF.
In the short-term, Giusti said she believes it’s going to be the high quality data – live tissue banks, blood banks, electronic medical records, and data from myeloma patients – that will be the key to accelerating a cure.
“This whole field of where we’re pushing: Big data, open access, intellectual property rights, that was my dream and I really wanted to launch it and it needs a champion – a patient – saying it was no one’s fault but (instead caused by) not sharing data. The system is insanely broken, and it’s stifling the ability to find cures quickly,” she said.
The technology, she said, is now working in favor of a cure. And she said she’s proud MMRF is leading that charge.
In the long-term, whether she’s there to lead her foundation or not, Giusti said her ultimate goal is to find a cure for multiple myeloma and facilitate a transfer of knowledge.
“We have to take what we’ve learned and use it go across other forms of cancer,” she said. “And there are two ways to do that: Identify targets, new drugs that can be used for myeloma but also in other cancers because the drugs won’t be organ-specific anymore.”
For others who are fighting the same fight, Giusti said you don’t have to have a background in business and medicine to help eliminate the disease. She suggests finding a foundation to work with to help aid in the research and development processes – but that doesn’t mean you have to lead from the top.
“I think doing something (about the disease) makes you feel so much more empowered as a patient and gives you a lot more energy to fight your disease. Knowledge is power in understanding new therapies and treatments for your disease. People like to be in denial, but the more you learn, the better off you’ll be,” she said.
LINK
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