We are international

Recently in Paula Van Riper Category

ASH 2012

| No Comments | No TrackBacks


Last weekend I had the privilege to attend the ASH 2012 (American Society of Hematology) in Atlanta, Ga.   A conference attended by over 25,000 hematologists, oncologists, nurses, research investigators and pharmaceutical companies from around the global. I was a member of a special group, 10 Support Group Leaders and Teresa Miceli, RN from the IMF Nurse Leadership Board . Group members were invited to attend by the IMF and very special donors who specifically targeted their donations  to permit MM Support Group Leaders from around the country have this first hand opportunity to learn what cutting edge research is being conducted currently to move the treatment and understanding of the biology of Myeloma forward.

The Friday night kick off to the conference was a well organized IMF's Myeloma Symposium. The program was a huge success - probably over 700 attendees, at least, came to learn about the advances in Myeloma. Most of the attendees were hematologists and oncologists -  who were quizzed during the program using a remote control found on each chair. Once again, we learned that many of those in attendance were not well informed about the latest diagnostic tools and treatment regimens for Myeloma. Of course, these doctors were not Myeloma specialists and at least their attendance was a positive indicator that they wanted to learn more about Myeloma. So what did we the patient learn from the quiz? Clearly, Myeloma patients should make every effort to obtain the medical support and guidance from an experienced Myeloma physician. Why? Their life depends on it!

Our trusty group had the good fortune of having our time efficiently organized and coordinated by Robin Tuohy, the Director of Support Groups for the IMF. Without the benefit of Robin's design plan to keep us focused with an hour by hour agenda of when to depart, what events are of the most impactful for MMers. when and where to eat........ we could never have navigated the conference with such efficiency and be so productive. Kudos to Robin and Michael her co-pilot / husband who provided her with valuable assistance and support!

Our days were packed with programs to attend - learning about the latest research from Myeloma specialists and researchers from around the world. Even for me, a 13 year veteran of Myeloma and familiar with Myeloma terminology these scientific presentations were heavy with medical jargon--- often quite dense and tough to slug through. But once again Robin anticipated this challenge and invited Teresa Miceli to join us on the trip to help us sift thru the medical complexities. Teresa, a very experienced  RN from Mayo Clinic - Myeloma Center in Rochester Minnesota helped us each day at lunch, dinner and in between interpret and understand more fully the information we were gleaning from these presentations. Thank heavens for Teresa!

Sunday evening we all were invited to attend a Foreign Journalist Workshop. Journalists from around the globe attended, curious to learn from Dr. Durie and other MM specialists - What is Myeloma?  What are the new and emerging therapies?  The program was sponsored by the IMF and Myeloma Canada.

I was honored to share my 13 year journey with Myeloma at this event - along with my current success on a new exciting drug called Pomalidomide, available to me via a clinical trial. However, the highlight of the evening was the revelation shared by a Brazilian physician that they recently diagnosed a 8 year old boy in her country.  The room grew instantly silent - the shock and surprise was palpable. What do you do? Why was someone so young diagnosed with a disease generally for people of advanced age? How do you treat someone so young? Where do you start? Does anyone have a protocol for a patient so young? Other than words of empathy and concern - no definitive guidance was forthcoming.  To intensify the problem, we all soon learned that in Brazil very few MM drug regimens are available - Brazil like other South American countries does not even have Revlimid - a drug approved in the United States  7 years ago. A glimmer of hope was provided when the IMF South American representative assured all journalists that when cases such as this are brought to her attention, she will work very hard with the patient, doctor and government agency to gain special approval for life saving drugs such as Revlimid.

Back at the conference the next day, lots of new information was offered about the positive results of two of the newest drugs for Myeloma, Carfilzomib recently FDA approved this year and the Pomalidomide, not yet approved but hopefully it will be shortly - perhaps even in early 2013.  Data on these drugs and others such as MLN 9708, a pill form of a proteasome inhibitor (Velcade, Carfilzombi like) showing much promise.

Many more combinations of drugs are being conducted than I can list. Which translates into a great reason for MM patients and their loved ones to be very hopeful. We have many more drug options than ever before - drugs with positive outcomes  - such as; Velcade, Revlimid, Carfilzomib, Cytoxan, MLN 9708, Dex, Prednisone, Cyclophosphamide and now waiting in the wings Pomalidomide.

These new combinations provide MM patients with a hopeful future - we all want to know that when we relapse - new treatment options that have been tested and proven effective are readily available.

The conference was a wealth of hope, inspiration and creative minds working to understand more thoroughly the biology of the disease, how genetics plays a role in the outcome of a patient's disease progression and making sure the door stays open for new ideas to lead the way in the treatment of Myeloma.
I am immensely grateful to the IMF for advocating that patients and support group leaders have the latest information on how to live their lives, while coping with the effects of Myeloma and treatment challenges .......all while "hoping" that a cure is not far off.

Programs like ASH bring all of us - one small step closer to calling Myeloma a chronic - treatable - non fatal disease.

With deep appreciation to all the members of the IMF and of course the generous special donors who made our trip to ASH possible.

Paula Van Riper
Central Jersey Multiple Myeloma Support Group

About this Archive

This page is an archive of recent entries in the Paula Van Riper category.

Pat Killingsworth is the previous category.

Teresa Miceli is the next category.

Find recent content on the main index or look in the archives to find all content.