Patient Seminars: The Heart of What the IMF Does

  • Philadelphia IMF Patient and Family Seminar
    October 18, 2018

    Patient Seminars: The Heart of What the IMF Does

    WRITTEN BY: Brian GM Durie MD
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The last IMF Patient & Family Seminar of the year was held this past weekend in Philadelphia. These two-day meetings bring patients and caregivers together with myeloma experts, nurses, and IMF staff to educate and reinvigorate the myeloma community in the battle against multiple myeloma. The Philadelphia seminar was particularly emotional and special, largely because of the people who attended. They included 26-year survivor Marilyn Alexander, who serves as inspiration for the local support group and the annual Miles for Myeloma 5K event, which has raised so much money for myeloma research; newly diagnosed patients struggling to understand the disease; and relapsing patients, desperately looking for the next best option to continue the fight. All, in their own way, are Myeloma Warriors—some well-seasoned, others Warriors-in-the-Making.

Connecting to Create Real Hope

As patients and caregivers listened and asked questions throughout the two days, it was clear that many anxieties and frustrations were being aired, maybe for the first time. Experts patiently offered suggestions and advice. In between sessions and at meal breaks was time to connect and get answers to personal concerns. Before our eyes, the fears about myeloma were being transformed into hopes—for new ways forward, for better discussions with local doctors, and for better outcomes and quality of life.

Individual Patient Stories

The most valuable part of the exchanges that take place at the IMF Patient & Family Seminars is the feedback from patients themselves. For example, one patient asked about daratumumab + pomalidomide [+ dexamethasone] as a combination. The experts confirmed that the combination is a highly valid option at relapse. But even more convincing, clearly, are patients who chimed in to say that they have been tolerating the regimen very well and are now in sustained remissions! Patients want to know the best maintenance schedules to, hopefully, continue in remission as long as possible. And what about the dexamethasone? Can the dose be reduced, and the benefit sustained? (The answer is yes.) Patients in Philadelphia asked many questions about treatment maintenance, the pros and cons of transplant, how long to stay on Zometa (or Xgeva, a potential alternative), and, of course, about all the new immunotherapy protocols—especially for patients with relapsing disease.

Up-to-Date Information from True Experts

We were fortunate to present true experts across the spectrum of myeloma caregiving and leadership. Sharing their valuable experiences in Philadelphia were patient advocate Yelak Biru, IMF Board Member and leader of the North Arkansas Support Group, and the ultimate expert in myeloma caregiving, Susie Novis, IMF co-founder and president. Nurse leaders, including Diane Moran, IMF Senior Vice President of Strategic Planning and creator of the IMF Nurse Leadership Board, were also in attendance. On the scientific side, it was tremendous to be in Philadelphia, the origin of so much fantastic research on CAR T-cells at the University of Pennsylvania. Award-winning researcher Prof. Carl June’s clinical colleagues, Prof. Ed Stadtmauer and Prof. Alfred Garfall, provided amazing updates and insights on this exciting work.

The Role of CAR T-Therapy and Other Immune Approaches

Prof. Stadtmauer provided an excellent overview of CAR T-therapies. Clearly, these therapies offer dramatic benefits, but the toxicities and duration of benefit—as well as the high costs—need to be part of an active discussion about the role of CAR T-therapy.

One patient spoke up during the meeting about her CAR T experience.  This young mother had used up what appeared to be all her options prior to CAR T-treatment. With no preconceived hopes as to the outcome, she underwent a first CAR T-therapy about one-and-a-half years ago. Luckily, despite serious concerns, she had no serious side effects (no cytokine release syndrome [CRS]). She achieved a dramatic, life-saving remission for about one year. Then, the myeloma relapsed with multiple new lesions. It was decided to give her a second CAR T-treatment using a higher dose of cells. Again, no CRS. Wow, this was lucky!

Now she appears to be responding yet again. This amazing woman accepts the uncertainty of these challenges with a remarkable grace, humor, and a positive attitude. When I asked her about her extraordinary attitude, she reached deep into her handbag and gave me a small card with a pop-open part on the front. The card read “Love Life.” The pop-up part had an individual message, such as “enjoy each day as a blessing,” or a similar positive message. For this woman, and many other patients, each new day is a blessing to be cherished.

With so many new immune therapies coming into trials, such as bispecific monoclonal antibodies including AMG 420 (just starting in the US), and the GSK antibody/drug conjugate already in trials, there can be a silver lining for patients for that new best hope.

“Love Life” as the Way Forward

The act of cherishing each new day can strengthen the effort to achieve the best outcome. It is part of trying to become a positive and hopeful Myeloma Warrior (or Warrior-in-Chief). Similarly, the experiences at the Patient & Family Seminars strengthen the IMF firm belief that “knowledge is power,” while letting patients and caregivers know that they are not alone.


Dr. Durie sincerely appreciates and reads all comments left here. However, he cannot answer specific medical questions and encourages readers to contact the trained IMF InfoLine staff instead. Specific medical questions posted here will be forwarded to the IMF InfoLine. Questions sent to the InfoLine are answered with input from Dr. Durie and/or other scientific advisors and IMWG members as appropriate, but will not be posted here. To contact the IMF InfoLine, call 800-452-CURE, toll-free in the US and Canada, or send an email to infoline@myeloma.org. InfoLine hours are 9 am to 4 pm PT. Thank you.

 

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