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As a teacher, Ronnie Maynard kept experiencing ongoing colds and infections. Eventually, after a doctor’s visit, she was diagnosed with multiple myeloma in June 2000. In 2001, Ronnie traveled to Philadelphia to stay with her mother while she underwent a stem cell transplant. At this time, both…
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After Maxine wrenched her back, she went for a number of doctors’ visits, and was finally directed to get a bone marrow biopsy. As a result, she was diagnosed with multiple myeloma. Having worked in oncology medical records, Maxine was shocked because this was a disease she’d never heard of.…
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Brenda Johns was diagnosed with multiple myeloma on her 50th birthday. As she and her husband commented, the news was very sobering and brought them closer together. After undergoing combination drug therapy and a stem cell transplant, Brenda experienced a remission. In 2015, the doctors noted that…
News Article
The Susie Novis Durie Educational Grants, created to help member organizations of the IMF’s Global Myeloma Action Network (GMAN) increase education, awareness, and access to treatment, were given to three nonprofits groups at the GMAN summit in Copenhagen. Recipients are: Mijelom CRO in Croatia,…
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Diagnosed with myeloma in February 2009 at the age of 47, Arlene Preisendorf recalls contacting Support Group Leader Dr. Jim Omel just a few days later. She shares how Jim connected with her and her husband by talking about his own experience with the disease, and also providing them with breadth…
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Janet Kerrigan recalls that “2011 was going to be great year.” Her youngest daughter was getting married, and 126 family and friends were attending the wedding. Shortly after that, Janet’s family rescued a dog from a shelter. And then a couple weeks later, Janet felt a sharp pain in her chest while…
Videos
In this week’s video, Dr. Brian G.M. Durie explains why MRD testing is important for assessing the results of clinical trials, but is not yet ready for the clinic.
BOTTOM LINE:
In clinical trials, the new criteria are essential to assess new drug…
News Article
North Hollywood, California, July 27, 2016 -- The International Myeloma Foundation (IMF) – the oldest and largest organization dedicated to improving the lives of myeloma patients while working toward prevention and a cure – says researchers have now established the scientific…
Videos
Dr. Shaji Kumar of the Mayo Clinic in Rochester, Minnesota, discusses the exciting new Black Swan Research Initiative® clinical trial: ASCENT, which stands for Aggressive Smoldering Cure Evaluating Novel Rx Transplant.
In the ASCENT trial (which will begin enrolling patients later this year),…
Videos
In this video, Dr. Sigurdur Kristinsson of the University of Iceland describes the exciting new Black Swan Research Initiative® study, iStopMM (Iceland Screens, Treats, or Prevents Multiple Myeloma). As part of the iStopMM study, 140,000 Icelanders over the age of 40 will have their blood samples…
News Article
IMF Launches Groundbreaking Large-Scale Screening to Prevent Myeloma
In April, the International Myeloma Foundation proudly announced that the organization is the major funder of the world’s first large-scale screening study aimed at preventing myeloma before it develops.
The study, iStopMM (…
News Article
Pembrolizumab
At the 2015 Annual Meeting of the American Society of Hematology (ASH) there was a lot of excitement about one drug (already FDA-approved with the brand name Keytruda® for melanoma and non-small cell lung cancer) that is a new type of monoclonal antibody against a…
Videos
In this week’s video, Dr. Brian G.M. Durie answers a question about whether a patient should undergo a bone marrow biopsy, even if treatment is not recommended at the time.
Bottom Line:
If you are unsure about diagnosis, treatment, or testing, consult an expert.
Videos
In this week's video, Dr. Brian G.M. Durie addresses if patients should continue certain treatments.
BOTTOM LINE:
When the disease is controlled, ongoing maintenance is still a good choice.
Videos
In this week's video, Dr. Brian G.M. Durie discusses how fear may lead to imagined symptoms of myeloma.
Bottom Line:
Successful treatment will drive away symptoms that exist only in your mind.
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In this week’s video, Dr. Brian G.M. Durie explains that patients should keep a close eye on their platelet counts after undergoing a stem cell transplant.
The BOTTOM LINE:
If platelet counts drop too low, therapy adjustments should be considered.
Videos
In this week’s video, Dr. Brian G.M. Durie discusses how immune therapies work in the treatment of myeloma.
The BOTTOM LINE:
Best bets to fight high-risk myeloma are therapies that replace, rather than manipulate, the immune system.
Videos
In this week’s video, Dr. Brian G.M. Durie answers questions about high-risk multiple myeloma.
BOTTOM LINE:
Over time, different myeloma patterns emerge.
Videos
In this week’s video, Dr. Brian G.M. Durie discusses the use of virus trials in the treatment of multiple myeloma.
BOTTOM LINE:
The virus trials are generating excitement. Contact the IMF to learn more.
Videos
In this week’s Ask Dr. Durie, Dr. Brian Durie discusses how to learn about your own risk factors for secondary cancers when undergoing MM treatment.
The BOTTOM LINE:
Know your own risk factors and discuss the pros and cons with your doctor.
Videos
In this week’s video, Dr. Brian Durie provides insight on how to assess response to various myeloma treatments.
BOTTOM LINE:
By checking M-protein levels after each cycle of treatment, we can assess the true benefits of each therapy.
Videos
In this week’s video, Dr. Brian G.M. Durie unveils a new BSRI project which studies genetic factors (though there are few) that are linked to myeloma.
BOTTOM LINE:
If we identify genetic factors in MM, we can refine treatments accordingly.
Videos
In this week’s video, Dr. Brian G.M. Durie explains the meaning of the term “risk,” as it relates to myeloma.
BOTTOM LINE:
The use of the word “risk” in myeloma staging can be confusing.
Videos
In this week’s video, Dr. Brian G.M. Durie discusses how to safely use the bisphosphonate Zometa to control myeloma bone disease.
BOTTOM LINE:
Discontinue Zometa after two years unless bone disease is a major concern.
Dr. Brian G.M. Durie serves as Chairman of the International…
Videos
click on the image above to watch the teleconference
(to view the teleconference in fullscreen, click on the bottom right square icon beside the YouTube logo)
The IMF’s ”Living Well with Myeloma” quarterly teleconference series is designed to cover all the…
Videos
On May 26, 2016, the International Myeloma Foundation’s Senior Director of Support Groups and spouse of Michael Tuohy, a sixteen-year myeloma survivor, testified at the Comparative Effectiveness Public Advisory Council’s Public Meeting (CEPAC) on Treatment Options for Relapsed and Refractory…
News Article
Thank you for this opportunity to share with you our story and concerns. My purpose today is to help you better understand myeloma, patient and caregiver concerns/stories, and why we are asking you to “walk in our shoes” regarding the report on myeloma treatment options prepared by the Institute…
News Article
Thank you first of all for hearing the public testimony today. My husband Michael Tuohy is a sixteen-year myeloma survivor, and that’s makes me part of this process. As Senior Director of Support Groups for the International Myeloma Foundation, I’m in touch with over 140 myeloma support groups…
Videos
In this video, Dr. Brian Durie discusses how to treat myeloma, even if the myeloma protein level is zero.
THE BOTTOM LINE:
Additional treatment at low levels of myeloma does have benefit.
News Article
North Hollywood, CA, June 2, 2016 – The International Myeloma Foundation (IMF) – improving the quality of life of myeloma patients while working toward prevention and a cure – will host the 7th Annual International Myeloma Working Group (IMWG) Summit June 7-9 in…
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Yvonne was diagnosed with multiple myeloma in 2005 at the age of 50. Her passion is surrounding herself with family and friends, including six grandchildren, who are her heart and soul. Yvonne also enjoys cooking, gardening, wine, and travel. She is thankful every day for all of God’s blessings…
News Article
NORTH HOLLYWOOD, Calif., March 3, 2016 – The International Myeloma Foundation (IMF) – improving the quality of life of myeloma patients while working toward prevention and a cure – is pleased to announce Takeda Oncology’s initiative this month to raise funds for IMF myeloma…
Videos
In this week's video, Dr. Brian G.M. Durie discusses how to develop a strong communicative relationship with your doctor.
Bottom line: Make sure you find a doctor with a communication style that suits your needs.
News Article
NORTH HOLLYWOOD, Calif., February 18, 2016– The International Myeloma Foundation (IMF) –improving the quality of life of myeloma patients while working toward prevention and a cure – is reaching out to primary care doctors, lawmakers and patients to raise awareness of the…
Videos
In this week's video, Dr. Brian G.M. Durie discusses the pros and cons of an autologous stem cell transplant (ASCT).
Bottom line:
It is rare to become worse after ASCT, and its likely benefits need to be evaluated on a long-term basis.
Videos
In this week's video, Dr. Brian G.M. Durie discusses the recently FDA approved drug ixazomib (Ninlaro®).
Bottom Line:
Ninlaro is an important addition to the lineup of myeloma treatments.
News Article
The International Myeloma Foundation (IMF) awarded its 2016 Brian D. Novis Research Grants in a ceremony December 5, 2015 at the 57th annual meeting of the American Society…
Videos
In this week's video, Dr. Brian G.M. Durie discusses the implications of being MRD-negative if you have high-risk 17p- myeloma.
Bottom Line:
Testing will hopefully lead to improved therapies for patients with 17p- myeloma.
Videos
In this week's video, Dr. Brian G.M. Durie helps make sense of the numbers and statistics in relation with your myeloma diagnosis and treatment.
Bottom Line:
The IMF will be a resource to help educate patients about statistics
Videos
In this week's video, Dr. Brian G.M. Durie answers the question if the insecticide DDT can cause myeloma.
Bottom Line:
We need to understand better how to prevent toxic exposure as another means of preventing myeloma
Audio
Justine Nackman
Boca Raton, FL
Justine retired in 1995 and has kept busy with several social clubs, a book discussion group, and visiting some of South Florida's natural beauty areas. She has lived in Florida for 20 years, moving to Boca Raton after her husband's death in 2010. Prior to that,…
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Michael Tuohy was diagnosed with myeloma in 2000 while in his mid-30s. He and his wife, Robin, who is Senior Director of Support Groups for the International Myeloma Foundation, immediately worried about how this would affect their children, who were 2 and 7 at the time. “Michael has not only…
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In Memoriam
Bill and Jenny Hack Palm Coast, FL
In this Myeloma Voices story, we pay tribute to the memory of Jenny Hack, who passed of multiple myeloma in February 2020. Jenny was a committed member of the IMF Support Group community, and led a very active life as a mother,…
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Terry and Kathleen Nairn
Hobe Sound, FL
In 2008, Kathleen Nairn was diagnosed with myeloma while in the emergency room with pneumonia following knee replacement surgery. She and her devoted husband Terry have five children and nine grandchildren—all of whom live nearby—and live an active life…
Videos
In this week's video, Dr. Brian G.M. Durie answers the question, "If myeloma is CD38 positive, shouldn't anti-CD38 antibodies work for all patients?"
Dr. Brian G.M. Durie is the Chairman of the Board of Directors of the International Myeloma Foundation. He began studying multiple myeloma over 30…
Videos
In this week's video, IMF Chairman of the Board Dr. Brian G.M. Durie answers the question, "If myeloma is diagnosed, is it okay to start with a holistic type of approach first?
Videos
This week Dr. Durie answers the question "In light of Tom Brokaw's recent myeloma diagnosis, is better early screening required?"
In this episode of #AskDrDurie, Dr. Brian G.M. Durie, IMF Chairman, discusses the importance of early detection screenings in order to diagnose myeloma. Find out why…
Videos
This week Dr. Durie answers the question, "Are PET/CT scans useful for a patient with MGUS?"
Videos
In this episode of #AskDrDurie, IMF Chairman and Co-Founder Dr. Brian G.M. Durie addresses a question about what kind of maintenance therapy is recommended for those myeloma patients who have the t(4;14) chromosome abnormality.
Videos
In this episode, Dr. Brian G.M. Durie answers a patient-submitted question regarding receiving an initial diagnosis of standard myeloma, having treatment, and then being told the myeloma was high risk. He explains when and why that can happen and discusses different kinds of testing involved.…