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
I am one of the ten support group leaders attending ASH with the International Myeloma Foundation. I've had the
privilege of attending ASH in the past and still find this meeting full of information and hope for myeloma patients' futures.
To give you a feel for what it's like to be at ASH attending the oral sessions, the rooms are PACKED with researchers and doctors who want to learn the latest in the world of myeloma. Some of these oral session auditoriums seat thousands of people.
While sitting in one of the oral sessions on Sunday, a young woman turned around and asked me if I was with the International Myeloma Foundation. I responded yes, and she told me that she met my wife, Robin, and I last year at the IMF Research Grant Awards program. She had received an award last year and we had the chance to chat more with her about her research. We even took a picture with her.
Charitha Madiraju , Pharm., PhD, went from receiving an IMF Research Award last year, to this year receiving the honor of having a poster at ASH! Quite an amazing feat to say the least. Charitha, who works in the Reed Lab,
Sanford-Burnham Medical Research Institute in LaJolla, CA, was so excited about presenting her poster that evening, she invited us to attend.
She was so grateful to the IMF for the initial grant, and I came away with the feeling of how wonderful it is that this IMF Grant Award program exists to encourage young researchers to get interested in the field of myeloma!
Congratulations to ALL this year's IMF Research Grant Award recipients. We can only hope that their futures in myeloma will include posters and more at next year's ASH! Who knows, one of them may even find a new
drug, or shall I be so bold to say CURE, for myeloma!
The IMF support group leaders ended ASH together late Monday evening gathered together to watch and share the IMWG conference debate between four of the world's myeloma leaders. Robin did her usual amazing job of organizing the logistics and we didn't even have to leave our hotel. The evening was a perfect ending and cemented the camaraderie which we had developed over four days. Our final hugs were warm and meaningful.
I have read the blogs of the other attendees and agree with all of their superlatives. In their own way, each one
told of what they witnessed at ASH and emphasized the promise of new treatments for myeloma. It is interesting how we could all observe the same oral presentation or poster and remember different aspects of it. Reading all
the blogs gives a bigger picture of the elephant and the picture is promising. Myeloma is under serious attack and this horrible cancer WILL be cured. This Grampy is not a tweeter, but I certainly learned the power of social networking. Thanks to Yelak, Cindy, Robin, and others for getting the message out in a way which is new to me.
I have had the privilege of attending other annual ASH meetings so have some perspective on the event as a whole. The most noticeable change this year is the huge interest in each and every myeloma session. We SGLs knew it was important to arrive early because many events would be standing room only. The interest in our particular cancer has never been higher. The more minds focused on combating this scourge the better. The more approaches attempted the better. There were nearly 500 posters on myeloma this year, and some of the targets discovered and
drugs in early phase studies are especially exciting. We don't care if a great new treatment comes from Germany, Australia, France, Houston, Rochester, or Timbuktu.
Thank you so much IMF for all you do for so many of us. How dismal and dark our short futures would be without your leadership. Cindy expressed her fear and tears quite well in her blog, and explained how those fears were turned into hope when she arrived at her first support group meeting. We can all relate to that and have "been there, done that." On a more personal note, thank you Susie for the foresight in bringing a few SGLs to ASH. Sharing what we know and what we have learned is empowering both to us and to those we help. Lets all keep working together to extend lives and improve their quality.
Thank you for a truly incredible experience. I was honored to be one of the leaders chosen to have the opportunity to attend the ASH conference in Atlanta I felt like a kid going to Disney World for the first time, but this was Myeloma World and the Myeloma specialists from across the world were the "characters" I came to see and hear.
I learned so much and left Atlanta with a feeling of HOPE. The Friday IMF Satellite Symposium set the stage for the rest of the meeting. I learned new acronyms in that alphabet soup of myeloma-MDR, MTD, DLT, aSE, CCd, PCP and the list goes on. My learning continued through all the poster sessions and special IMF events like the IMWG' s breakfast, the Research Grants Awards Reception and Monday night's debate. The highlight of the conference for me was the Journalist Workshop.
Besides the education ASH has provided it also gave me the opportunity to network with other leaders, nurses, doctors, and representatives from various organizations that provide patient advocacy, education and support. I know that some of the connections I made at ASH will develop into life-long friendships and support networks.
Now it's my turn to figure out how to make sure all I learned is shared. I want to reach as many people as possible. I will start by sharing my ASH experience at one of Philadelphia Multiple Myeloma Networking Group's monthly meetings. The ASH experience will also allow me to be a more effective First Connection and Fourth Angel Mentor. I will continue to Tweet as @MyelomaTeacher too! One of my followers already asked if she could call me so we can talk.
A few weeks after I was diagnosed with myeloma in 2008 I drove myself to The Patient and Family Seminar in Short Hills, NJ. I was depressed and scared because I didn't know what to expect, but that was the best car ride I ever made. I was greeted by a group of smiling, helpful people who gave me tons of brochures and a canvas bag with the IMF logo on it to put them in. I still have that bag.
When I entered the meeting my eyes were swollen and red because I had been crying the whole way up the NJ Turnpike, but soon I realized I found a very special group. The people in the audience were engaged and asking questions and the specialists on the panel took the time to patiently answer each one. I had no idea what anyone was talking about, but what I did know that this group offered hope and knowledge. I felt at home, after all I was a teacher and agreed 100% with the IMF's motto that Knowledge is Power. I remember one of the panelist saying that an educated patient has the best chance for long-term survival. It was at that very moment I decided to find out everything I could about what myeloma is and how it can be treated.
The IMF has provided me with much of my Myeloma education with its brochures, Patient and Family seminars, teleconferences, webcasts, SGLS and now ASH. I am eternally grateful for your mission to educate patients so that they can be active participants in their healthcare. I feel empowered and I am no longer scared or depressed thanks to your dedication to us- the patients. You are the best!
Thanks once again for an experience I will never forget. I only hope that I can continue to spread the HOPE.
PS I know that elusive black swan will soon be swimming into your pond!
PPS- Please share this with everyone who has a role in educating us patients.
This is not my first attendance at the American Society of Hematology. It is not even my first time as the acting nurse liaison for the IMF support group leaders (SGL's). However, this year's experience seems to be so
much more than past experiences. Four days in a group of people filled with energy, passion, and a drive to further
the science of multiple myeloma. I'm referring to the attending support group leaders. I have not even begun to describe the dedicated physicians and researchers. The SGL's, most of whom have the diagnosis of multiple myeloma, have helped to bring the science of multiple myeloma forward by participating in clinical trials and who represent the graphs and the statistics presented at each session. With their peripheral neuropathy, scheduled medications and aches and pains, they get up each day to sit long hours and walk cement floors to learn, knowing this will worsen their symptoms. They do it to better their experience and to bring this information back to their support groups, to better other's experiences. I marvel at them - not because they HAVE multiple myeloma, but because they LIVE with multiple myeloma.
During this meeting, it was my charge to help interpret the information being presented in a way to further the SGL's knowledge and perspective. In reality, I was the recipient of a greater perspective from them, and am honored to have been a part of this marvelous experience. I thank the SGLs for including me in their learning journey, and I beg the researchers to continue their work in search of better treatments that have fewer side effects and ultimately a cure.
I had some extra time this morning to reflect on this year's ASH while sitting at the Atlanta airport, waiting to board my flight back to Tampa.
I have the extra time because for once, everything went right this morning on the way to the airport. The normally impossible rush hour traffic parted for my cab like the Red Sea. I don't know if you have ever flown through Atlanta, but security here is the worst!
The lines are so long, they even run narrow cattle lines out into the shopping area atrium. But not today. Today I walked right past the zig-zagging security maze, around two corners and down the normally packed bottle-neck leading to the screening area.
It's a miracle! I made it through security and out to my gate in record time. Ever notice how that NEVER happens when you are in a hurry?
This morning I shared a cab on the way to the airport with my good friend, Cindy. Cindy's Twitter handle is @MyelomaTeacher. She actually won an award as one of the five favorite Tweeters at ASH. People were coming up
to her because they recognized Cindy's picture from their Twitter feed!
Like me, Cindy is a myeloma support group leader, here to help the IMF get the word-out to patients and caregivers about this year's meetings. After all, an informed patient is a safe, longer lived patient!
We hugged and said good by, I grabbed something for breakfast and settled-in to write.
Yesterday I attended oral presentations featuring data about a dozen new drugs or drug combinations. I read abstracts about a dozen more. And all look promising.
The way I see it, you can look at this year's ASH two ways. First, you can play the odds. Something good is bound to develop when so many researchers are working so hard on so many different myeloma therapies. This is sort of the, "Throw enough at the wall and something will stick." approach.
Playing the odds. There must be a genuine breakthrough drug hidden among all of that research, right?
Maybe. OK, probably. I'm leaving ASH hopeful and energized!
But a myeloma patient who's running out of options--or a battle tested and cynical myeloma patient/writer like me--could spin all of this a different way.
Saturday on my daily blog I wrote about a presentation I attended featuring one of Mayo Clinic's best and brightest, Dr. Vincent Rajkumar. Dr. Rajkumar is traveling down a myeloma therapy road less traveled. In a time when
most myeloma docs believe hitting myeloma hard up-front, Dr. Rajkumar is still willing to consider a less toxic incremental approach.
I was surprised to learn that Dr. Rajkumar, and many of his collegues, still prescribe the simple combination of Revlimid and dexamethasone for low-risk (also often referred to as standard-risk) newly diagnosed patients.
That's the same induction regimen that I was prescribed when I visited Mayo Clinic almost six years ago. How is that possible? All of these new drugs and nothing has changed after six years?
See what I mean? The myeloma world is full of promise. Kyprolis has just been approved, and pomalidomide (Actimid) should soon follow--with a dozen other assisting, combination therapies waiting in the wings.
Great! I saw a lot of progress being made this year at ASH. Baby steps on the way to adding a half dozen or more drugs to our specialists' arsenal in the next year or two.
But that said, the more things change the more they stay the same! Patients are still being pushed to transplant, and the wide gap between the practical and theoretical won't budge.
That's one reason that we were all here this weekend. To help doctors and researchers remember that behind all of the charts and graphs and abstracts are real patients--and to give the theoretical a nudge.
Today was the final morning at ASH with presentations from 7:30 am - 9 am. We heard about treatments with
Bendamustine-Vel-dx (good results) as well as higher dose of Carfilzomib with longer infusion time (better response but it comes with higher toxicity). There was also an interesting study looking at infection rates for MM patients, who are 7 times more likely to get infections compare with non-MM folks and 12 times higher in the first year after diagnosis...so we need to be careful.
For patients diagnosed with kidney involvement (about 17% of us), novel therapies (Thal, Rev, Vel, Cfz, Pom...) has provided survival improvement. [BTW, many of these drugs are not so "novel" anymore. I was in a Thalidomide trial early '98.& Wonder why that name sticks around.]
After flying home, I'll be summarizing my results (typically a 6 pg write-up) and present them to our SF Bay Area MM support group. I'm always happy to email it to others...just let me know if you want it.
Hope my blog has been informative, and I'm already looking forward to next year's ASH Dec 7-10 in New Orleans.
So, as I mentioned previously, today is Myeloma Monday, meaning the first oral presentation began at 7am and the last one ended at 6pm. Yes, we had some breaks but I used them to review the new posters and walk to different rooms in the large Convention Center. Each presentation is about 13 minutes with 2 minutes of q&a's...and the 15 minute time limit is monitored very closely.
Here's a sample presentation title: "A Phase 1/2 Study of Weekly MLN9708, in Investigational Oral Proteasome Inhibitor, in Combination with Lenalidomide and Dexamethasome in Patients with Previously Untreated Multiple Myeloma (MM)." The Powerpoint presentation topics typically cover Background, Trial Rationale, Treatment Plan, Patient Demographics, Trial Results (Responses, Survival Outcomes, Adverse Side Effects), Conclusion, and Future Directions. I'm watching slides fly by at real time speed, all the while trying to record accurate information and listen to what's being said. It's pretty intense as you listen to the terminology (for example, we know Lenalidomide as Revlimid) and try to interpret the results.
Today I heard good results for Newly Diagnosed patients with MM, including the regimen mentioned above (MLN9708-Rev-dx). Others included:
Rev-Vel-dx (RVd) + Vorinostat
[Sorry...I see I use both "+" and "-" to mean "with".] And there were certainly presentations for Relapsed-Refractory MM patients:
Tabalumab (anti-BAFF Antibody) + Velcade
ARRY-520 (KSP Inhibitor) with or without dex
Lorvotuzumab Mertansine (LM, an antibody-drug conjugate) + Rev-dx
And I also listened to several presentations about transplants (SCT) and Maintenance:
Maintenance after SCT with Vel-Thal vs Thal vs Interferon
SCT outcomes '95-99, 2000-'04, and '05-10
Comparison of Induction (with poor response results) followed by 1) SCT or 2) "salvage" therapy (to improve response), followed by SCT. [Turns out it doesn't matter.]
So how's a patient to know as well as your oncologist decide what's best for you? So many options lead to so many choices lead to so many questions. This MM is really a very clever animal...once you think you've beaten it, MM figures out another pathway or another cell surface protein, or gets help from the surrounding environment to figure out a clonal variation or itself to avoid cell death.
While typing this, I'm watching a wonderful IMF-sponsored debate among MM experts Drs. Durie, Polumbo, Rajkumar, and Richardson. If they disagree on first-line treatment, 2, 3, or 4 drug regimens, and maintenance, how are we to know? We all want the "best" treatment and get frustrated not having definitive answers. Well, let me tell you what's worse...having only 2 treatment options Melphalan-Prednisone or VAD inductio + SCT and told the average life-span is only 2-3 years. That was my choice 18 years ago. Personally, I'm much happier having more and much more effective/less toxic options.
ASH ends tomorrow morning so my final blog report will probably be written from the airport or after I return home. I'm looking forward to both.
At the IMF International Journalist Workshop here in Atlanta this evening, I
learned that myeloma survivor, Don Wright from St. Paul, Minnesota, had just
completed his goal of running marathons in 50 different states--all since he
was diagnosed eight years ago.
Good for you, Don! But as impressive as Don's public achievement seems,
it pales in comparison to helping save a life--mine.
Don was the first multiple myeloma survivor I met following my diagnosis back
in 2007. Don and his lovely wife and daughter invited me to join them for
lunch at one of the first IMF Patient/Family Seminars.
At the time I was lost. Utterly and totally lost. How was it
possible that an otherwise healthy, 51-year-old could be dying of bone marrow
Don calmly reassured me as I rattled-off questions with incomprehensible
speed. How long had he been living with multiple myeloma? Did he
have bone pain like me? What therapy was he on? Did it ever get any
By the time we finished our salads and started our main course, I had already
started to relax. Don spent almost an hour with me that day, quietly yet
confidently "talking me down."
But it didn't stop there. Don suggested I visit a nearby myeloma support
group with him the next week. In person, by email and over the phone, Don
helped me learn more about my cancer--and how to emotionally cope.
I'm happy and excited for Don on so many levels. To achieve such an
ambitious goal must be incredibly gratifying for him and his family. The
fact that his achievement will help raise awareness and funding for myeloma
research is icing on the cake.
But Don's most important achievement? Helping fellow patients like me see
that their lives don't have to end when the doctor says, "I'm sorry, you have
For that I will always be grateful. Feel good and keep smiling!
Sunday's sessions of the 54th Annual American Society of Hematology meeting was filled with Oral Presentations by Myeloma researchers worldwide. Repeated themes from previous days include:
Myeloma is not one disease
Myeloma is different from patient to patient and
Myeloma manifestation/clones change over the life of a single patient
Risk stratification and disease staging need to be combined to predict overall survival and design optimal treatment
New themes that I heard today include:
There is better understanding of not only patients but also the Myeloma's gene profile expression.
As a result, individualization of treatment is in the near horizon
Targeting the Myeloma is important. Targeting its micro environment is as important
Helped with Novel treatment regiments, the 5 year survival of patients older than 65 has almost doubled from 2006 to 2010 compared with 2001 to 2005
Pomolidomide is an important drug. It seems to work even when other IMiDs stop working
Dr. Durie summarized the Dynamic Drug Development Landscape as follows:
Existing Drugs -> New Combination
New Drugs -> Coming Along
IV <-> Injection <-> Oral
At the end of the day, the International Myeloma Foundation (IMF), with Myeloma Canada and the IMF Latin America, held a Journalists' Workshop. There were many great discussions by Drs. Durie, Paul Richardson, Xavier Leleu and Robert Orlowski. Dr. Orlowski focused on Carfilzomib while Dr. Leleu focused on Pomalidomide. Dr. Richardson drove the need to prevent Myeloma disease from running away. He indicated because Myeloma increasingly becomes resistant to treatment its best to get as best an initial CR or VGPR as possible. As such there is no need to keep your best treatment for later.
He used an interesting analogy and said "In the absence of a mongoose we need to keep the snake in the basket".
Just like during yesterday's award ceremony, patient stories reminded Doctors and Journalists that this is not a theoretical scientific discussion but rather a life and death balancing act.
The major message of the evening was delivered by Susie Novis, co-founder and president of the IMF. Susie indicated there are over a million patients living with Myeloma worldwide. Of these over 40% of them are younger than 65 and there is currently an 8 year old Brazilian who is diagnosed with Myeloma. While rapid advances are being made in the standard of care for Myeloma, that standard of care is NOT global. She asked why treatment should stop at borders when Myeloma doesn't.