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Why wait for end-organ damage to treat myeloma? Dr. Vicent Rajkumar, MD explains the new IMWG guidelines that will change how myeloma is treated
Dr. Vincent Rajkumar, MD Mayo Clinic Interview Date: November 20 Summary Dr. Vincent Rajkumar, MD, of the Mayo Clinic shares the very large number of changes by the International Myeloma Working Group for the treatment of myeloma. This is a group created by the IMF with over 180 myeloma specialists who are weighing in to change the […]
Calling All Musicians: New Music Contest to Support Myeloma Research!
Our new Songs for Life contest is in full swing to help raise funds for multiple myeloma research. Tell your musical friends and family to donate a song between now and November 15. Winners to be included on the Songs For Life 2015 album with all proceeds benefiting myeloma research. Spread the news today!
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BY JENNY AHLSTROM
After I finished three years of myeloma treatment, I was cautiously optimistic but realistically worried about the future of my health. Would the aggressive treatment I had “stick” for years or would I have an aggressive form of myeloma that would cause an immediate relapse? Because I am not keen on a last-minute panic attack when it comes to my health, I logged in to www.clinicaltrials.gov to review the open clinical trials, just in case I needed one. I was blown away. There were over 425 active clinical trials for myeloma testing new drugs or combinations of drugs with names that meant nothing to me.
How was I supposed to choose my next treatment when I didn’t know what the difference was between pomalidomide and lenalidomide? Or if daratumumab might be interesting? Or how immunotherapies were used in myeloma? With a medical community that disagreed about the approach to myeloma, how could I find the best, most appropriate clinical trial for me?
That simple question started my journey to find answers for questions we all share. After I learned that fewer than 3-5% of myeloma patients participate in clinical trials, it became very obvious that unless more of us joined these trials, new discoveries were going to take the typical 10 years to find. I don’t think most of us have that kind of time -we’re on myeloma time!
Being an impatient myeloma patient, I decided to start an online radio show and named the series mPatient Myeloma Radio. Not a radio broadcaster by any means (and that should be fairly obvious to everyone) I started interviewing the best and brightest in myeloma to learn more about the latest, cutting-edge research being done. In the second show, Dr. Tricot said, “Getting the right treatment is not a matter of convenience.” Pushing the envelope in myeloma is equally inconvenient but work worth the reward. There are many of us that now better understand what is happening in myeloma by investigators all over the world and have learned about key research and clinical trials taking place.
While a clinical trial may not be right for every situation, it is the way that new discoveries are found and tested in multiple myeloma. They are what leads to a cure. I have now participated in three clinical trials and will choose one if and when I relapse. Because of this show, I feel more prepared to make those decisions.
I have interviewed over 40 top myeloma specialists from all over the world. I am grateful and overwhelmed at their knowledge and skill. I now know what pomalidomide is, who should think about allo transplant, how the measles virus works, how myeloma treatment works in Europe compared to the US, and what my best options would be at relapse. I hope you or your family members or caregivers care enough about gaining the same knowledge that can steer you in the right direction.
I’ve had patients leave comments on shows and email me that they want to join a clinical trial or have joined a clinical trial because of the show. This is the reward for my “pay to work” project – the ability to make educated decisions about our care. We are the ones ultimately responsible for our treatment and have more power than we think in shaping the care we receive.
Because I also started the Myeloma Crowd website, I’d like to now consolidate. Starting in January 2015, the mPatient myeloma Radio series will now be called the Myeloma Crowd Radio series. The format will be the same – I will be posting all new upcoming shows and full shows with transcripts on the Myeloma Crowd site. The www.mpatient.org site will remain up for links to old shows, but archived mPatient 2013-2014 shows will also be moved onto the Myeloma Crowd site over time.
I am thrilled when someone learns something new that helps guide their treatment decisions. It makes the effort worthwhile and the knowledge that someone may join a clinical trial that could be a cure for myeloma is the most rewarding of all.
I hope you will consider the amazing number of new options and trials trying to hit myeloma from every side. The ever growing number of active trials (576 last time I checked) are not as overwhelming and the terminology is becoming manageable now that I know more. We have an entire community of dedicated myeloma specialists that want to see victory – patients cured from this disease. They won’t quit and neither should we.
Our first show of 2015 on January 9 will feature our first myeloma specialist of the series – Dr. Robert Orlowski, MD, PhD, who was brave enough to join MY experiment to make us all more informed, more capable patients with far better outcomes than we could be otherwise. Watch for more on his upcoming show!
All the best to you and yours,
You can start following Myeloma Crowd on Twitter @myelomacrowd and on Facebook at www.facebook.com/myelomacrowd
Our Previous Episodes
Digging deeper into high risk myeloma with Dr. Jesús San Miguel, MD, PhD, University of Navarra, Spain
Extending Outcomes with Continuous Myeloma Maintenance: Dr. Antonio Palumbo, MD, University of Torino
Detecting myeloma relapse early - The new Hevylite® test can help with Dr. Stephen Harding of The Binding Site
What's new in MGUS? Very interesting ASCO findings and the diagnostics you need to have as an MGUS patient with Dr. Brendan Weiss, MD
The hopeful discovery of an engineered measles virus for myeloma treatment with Dr. Stephen Russell, MD, PhD
Where are we headed with new agents and transplant approaches in myeloma? Dr. Paul Richardson, MD, Dana-Farber Cancer Institute
A compelling European approach in myeloma care: Collaboration, Referrals and Established Guidelines with Dr. Pieter Sonneveld, MD, PhD, Erasmus MC
Dr. Sergio Giralt of Memorial Sloan-Kettering discusses the role of transplant, how transplant side effects (including host vs. graft) are being minimized and how all roads to a cure lead through complete remission
Dr. Craig Crews of the Crews Laboratory at Yale University describes his discovery and development of carfilzomib (Kyprolis) and what it takes to get a new drug across the "Valley of Death"
Our Next Show: How does a drug begin as an idea and become an actual myeloma therapy in the clinic? Dr. Craig Crews, Crews Laboratory at Yale University discusses his discovery and development of carfilzomib (Kyprolis)
Dr. Bensinger discusses a wide variety of new approaches to treatment including monoclonal antibody studies, new oral proteasome inhibitor studies, combinations with and without transplants, and the pros and cons of allo vs. auto transplantation
Dr. Benson describes how immunotherapy and NK cells work, and why most cancers are genetic or molecular diseases and not anatomical diseases
Myeloma is not a single disease: The illuminating discovery and implications for care with Dr. Michael Kuehl, MD, PhD of the NCI
Dr. Michael Shapira, MD shares an early vaccine for myeloma and his work to raise the age ceiling for allo and auto transplants
Three myeloma themes with Dr. Robert Z. Orlowski of MD Anderson Cancer Center:Immunotherapy, making transplant better and using new small molecules for more convenient myeloma care
Dr. Leif Bergsagel, MD of the Mayo Clinic shares the impact of the MYC translocation in myeloma progression and relapse and a new target that boosts immunity while impacting myeloma cells
Genes that drive myeloma growth and why new discoveries of myeloma's complexities are hopeful with Dr. Jens Lohr, MD of The Broad Institute and Dana Farber Cancer Institute
Dr. Philip McCarthy of Roswell Park Cancer Institute on transplants: best induction therapies, best approaches for high risk and how patients can recover faster
Dr. Damian Green shares a new approach to combine two proven approaches (immunotherapy and radiation) to selectively target only active myeloma cells using the common CD38 protein
Find a multiple myeloma specialist near you. We’ve moved this directory to the www.myelomacrowd.org site.