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December 2012 Archives

ASH 2012

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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

My First Blog

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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!

Michael Tuohy

ASH reflections

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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.


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Dear IMFers,

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.

Cindy Chmielewski


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.

Reflections about this year's ASH

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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.

Feel good and keep smiling!


Day 4 ASH 12.11.12

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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.

Stay well and informed.


Day 3 ASH 12.10.12

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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:

  • Carfilzomib-Thal-dx
  • Rev-Vel-dx (RVd) + Vorinostat
  • Cytoxin-Cfz-Thal-dx ("CYCLONE")
  • Cytoxin-Cfz-dx
  • Cfz-Rev-dx

[Sorry...I see I use both "+" and "-" to mean "with".] And there were certainly presentations for Relapsed-Refractory MM patients:

  • Pomalidomide-Cytoxin-Prednisone (PCP)
  • Tabalumab (anti-BAFF Antibody) + Velcade
  • ARRY-520 (KSP Inhibitor) with or without dex
  • Pom-dx
  • Pom-Vel-dx
  • 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.

Stay educated,


Don Wright helped save my life!

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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 cancer?

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 better?

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 multiple myeloma."

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.

Sharing the Hope!

Yelak from the North Texas Myeloma Support Group!

This afternoon's oral sessions on myeloma featured four much-anticipated studies: Antonio Palumbo's (University of Torino, Italy) report on his VMPT-VT vs. VMP trial for 511 newly diagnosed patients ineligible for transplant (abstract 22); Martha Lacy's (Mayo Clinic, Rochester, MN) summary of data from 6 phase II trials at Mayo with pomalidomide and dexamethasone for 345 patients with relapsed/refractory myeloma (abstract 201); Paul Richardson's (Dana-Farber Cancer Institute, Boston, MA) report on the phase II study of the monoclonal antibody elotuzumab + len/dex for relapsed/refractory disease; and Michael Savona's (Sarah Canon Research Institute, Nashville, TN) presentation of the phase Ib dose-escalation study of oprozomib (Onyx's oral proteasome inhibitor). 

The four-drug regimen of VMPT-VT, which is VMPT Velcade, melphalan, prednisone, and thalidomide with two years of maintenance with Velcade and thalidomide, out-performed triplet VMP with no maintenance, the current standard of care in Europe, both in PFS and OS. Dr. Palumbo demonstrated that the 4-drug regimen with continuous therapy provided better disease control.  Due to toxicities in the elderly (>75 years) patients, however, it is a better regimen for those age 65-75.

Dr Lacy's presentation, a model of clarity and fluency, covered data on pom/dex studies performed at Mayo between 2007 and 2012.  Although dosing and eligibility criteria varied among the studies, the patients were heavily pretreated, 40% had abnormal cytogenetics, 17% had 17p deletion, and 44% were high risk.  Even in this population, the overall response rate of PR or better was 35%.   When asked, Dr. Lacy explained that the key differences between lenalidomide and pomalidomide are 1) pomalidomide can work in patients who are refractory to lenalidomide; 2) there is much less myelosuppression (impairment of the bone marrow's ability to make new blood cells) with pomalidomide than with lenalidomide, and 3) pomalidomide does not cause skin rash, as lenalidomide sometimes does.

Dr. Richardson's review of the data from the phase II study of elotuzumab +len/dex was also extremely encouraging.  In this study, a 10 mg/kg intravenous dose of the monoclonal antibody was compared with a 20 mg/kg dose.  We were all surprised to learn that the overall response rate in the 10 mg/kg group was 92% in this relapsed and refractory population, while the response rate in the patients treated with 20 mg/kg was 76%.  Sometimes, less really is more!  Responses were very rapid with either dose: one month for response and two months for best response.  PFS has not yet been reached in the 10 mg/kg group. We expect to see more of this drug in various combination studies that are ongoing.

We ended our day at the foreign journalists' workshop, where we were moved by the stories of four patients who have surmounted many obstacles with a combination of good therapy, good luck, and personal pluck. They are a testament to the will to live well and fully and to the effectiveness of novel therapies. The workshop also featured updates on research that has been or will be presented at the ASH meeting highlighted by Drs. Brian Durie, Paul Richardson, Robert Orlowski, and Xavier Leleu, followed by questions from foreign journalists.  There was also an impassioned plea to the press from Brazilian myeloma specialist Dr. Vania Hungria to advocate for the approval of Revlimid in Brazil.  Those of us who live in countries where we have access to the latest treatments must never take that access for granted.  It is heartbreaking that effective new therapies continue to be developed but are not available to patients in many parts of the world.  

Busy Sunday

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Myeloma was very prominent at ASH today with interesting new abstract reports and oral sessions. One of the first impressions we had was the great interest in our cancer. Very large rooms with sessions on myeloma were overflowing, at the same time dozens of simultaneous presentations on other hematologic topics were occurring.

Promising drugs, treatment combinations, and novel trials have been discussed, but I have seen no blockbuster standout at this year's ASH.  Many will not work out. All add to our knowledge base and all are important in combating this wretched cancer.  Clinical trials take time to accrue and eventually "mature". Hopefully by next years meeting, a standout drug will be emerging.  None of this paragraph should be read as discouraging, just realistic. Research and clinical advancements take lots and lots of time.

The two best agents coming are Pomalidamide and Elotuzumab. Pom has great promise to be FDA-approved by February 10 (it's (PDUFA date).   Elo is a monoclonal antibody directed against a substance found on the surface of myeloma cells called cs1. It shows rapid response, and in a group of patients being treated by Dr Paul Richardson an ORR (overall response rate) of 100% was seen. It even shows considerable activity in the 15% of patients with high risk disease.

The next best hope centers on an oral proteosome inhibitor MLN9708 which will also be called ixazomib. It is quite promising in late phase trials. Another oral PI by Onyx called Oprozomib has clinical potential, but also considerable GI toxicity (nausea, vomiting, diarrhea).

This evening foreign journalists from around the world were given an update on important myeloma information being presented at this year's ASH. Some of their questions and comments reflect frustration at unavailability of newer novel agents in their own countries. We were all saddened to learn that an eight year old child was recently confirmed to have multiple myeloma in Brazil. We have made good progress toward a cure, but we still have a long way to go.


Day 2 ASH 12.9.12

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Today was a busy one, having just returned from a meeting that ended at 10pm...but more about that later.  A couple of interesting posters focued on Carfilzomib, noting no evidence of late-onset toxicity with long-term usage (median 22 cycles), and Pomalidomide-Dex-Doxil possibly being an effective treatment for Rel/Ref MM patients.

Onto oralb presentations...the first about a cd38 monoclonal antibody call Daratumumab [Ok, so it's hard to pronounce but what about its benefits?] A small Phase I study of 32 patients at varying dosages resulted in 4 pts PR (13%), 6 MR (19%) and 5 SD (16%), which is very good for single agent activity. It was well tolerated, which is worth noting because cd38 is expressed in normal cells as well.  And staying with antibodies, the CS1 antibody called Elotuzumab continues to show  good results when combined with Rev-dx (14% CR, 92% ORR).  Although these patients were rel/ref MM, they had not taken Rev before.  A future trial call Eloquent (clever) will provide more complete results.

Several other oral presentation provided good results for Carfilzomib (Cfz)-Pomolidomide (Pom)-dx, Biaxin-Pom-dx, and Pom-dx regimens.  While Pom was typically tested at 2mg & 4mg dosages and will likely receive FDA approval in 2013 at the 4mg dosage, the lead investigator Dr. Martha Lacy (Mayo) said "2 mg works just as well as 4".

And a Phase III trial compared VMPT-VT with VMP, looking at the impact of adding Thalidomide to induction as well as maintenance along with Velcade.  The more robust regimen certainly resulted in higher PFS (35 vs 25 mos) and 5-yr OS (61% vs 51%) but neuropathy was certainly a side effect.

My day ended with a very educational and inspirational workshop for International Journalists.  There were approximately 100 in attendance, many with headsets providing real-time translation, and also streamed live to 20 countries. Susie Novis (IMF President) explained that 1 million patients worldwide are living with MM and "MM knows no boundaries, so why should treatments stop at the border?."

MM experts Drs. Brian Durie, Paul Richardson, Robert Orlowski and Xavier Leleu (France) described the evolution of MM therapies with special emphasis on Pom and Cfz, but also antibodies (mentioned earlier) and other (future) treatments options such as Rev-Vel-dx + Vorinostat, MLN9708 (oral proteasome inhibitor) + Rev-dx, and Subq Velcade-Cytoxin-dx.  So many options...at least in the US.  However, this isn't the case for a country like Brazil which still hasn't received approval for Revlimid.

One last note about Pom and Cereblon, an expressed protein that seems to correlate with efficacy of Thal and Rev.  However, Dr. Durie explained that Pom seems to work even if Cereblon expression is low!

Well, that's about it for the day.  Lots of information, and yet tomorrow is also known as "Myeloma Monday" with oral presentation going from 7am - 6pm.  And then I'll be watching the Myeloma IMWG Debate Round II tomorrow evening (check the IMF website myeloma.org for more details).

It's late and I have a 5:25am wake-up call.



After two days of anticipation, the first oral session in myeloma was at last presented starting at noon today. This session dealt with phase I/II studies of drugs for relapsed and refractory myeloma, including a single-agent study of an anti-CD 38 monoclonal antibody, daratumumab; the combination of carfilzomib with pomalidomide and dex; the first-time combination of dexamethasone with two immuno-modulatory agents, lenalidomide (Revlimid) and thalidomide; a single-agent study with a novel CDK inhibitor, dinaciclb; the combination of clarithromycin with pomalidomide and dex (nicknamed clap-d); and the first-ever drug developed in China, circular permuted TRAIL (CPT).

The daratumumab study presented by Dr. Torben Plesner from Vejle, Denmark, was noteworthy because this monoclonal antibody demonstrated responses in myeloma patients as a single agent in an early-phase trial. 15 out of 32 patients enrolled had reductions in their monoclonal protein, and there were 4 partial responses. It and elotuzumab are the two monoclonal antibodies that researchers are really keeping their eyes on.

Another highlight of the session was Jatin Shah's (MD Anderson, Houston, TX) presentation on the combination of carfilzomib, pomalidomide, and dex. The patients were heavily pre-treated, and 10 of the 46 were refractory to lenalidomide. The overall response rate was greater than 50%, with 13% complete or near-complete responses.

Dr. Shah's second presentation on the surprising combination of lenalidomide, thalidomide, and dex demonstrated that one IMiD can be used to overcome resistance to another. The overall response rate was 51%.

Dr. Tomer Mark's (NY Presbyterian/Cornell-Weill Medical Center, NY) study of clap-d provoked some skepticism with its dramatic improvement in progression-free and overall survival in patients who had received clap-d over patients treated with pomalidomide and dex alone. The addition of clarithromycin, an antibiotic, in a population of patients who had received between 5 and 15 prior lines of therapy, produced an overall response rate of 57%, with 6% stringent complete responses. 75% of the patients were refractory to both IMiDs and proteasome inhibitors. Dr. Jesus San Miguel asked Dr. Mark why he didn't do a clinical trial comparing therapies with and without clarithromycin, and Dr. Mark responded that it was not possible to get funding for such a study. Although the data was clear, there remain unbelievers.

Later today there will be a second oral session for myeloma. Stay tuned for blog updates, and look for the complete highlights publication with more studies and more details after the meeting is concluded.

Getting My Fill

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blogicon_ASH2012_teresam.jpgSaturday morning was a time for breakfast and a robust discussion by the International Myeloma Working Group (IMWG). I had the chance to have a filling breakfast and observe true dedication in progress. The IMWG breakfast was attended by physicians from around the world who are dedicating their lives and careers to finding better treatments and, ultimately, a cure for multiple myeloma. Projects recently completed and in progress were reviewed. New ideas were discussed, looking at where are there areas of need for guidelines, research and ongoing education. The energy and passion were palpable.

The breakfast filled my stomach and the discussion filled my head and heart. These dedicated people will not rest until the holy grail has been found--The Cure for multiple myeloma.


One day morphs into the next at ASH, but I think today is still technically Saturday. Today's highlight actually occurred this evening as we shared the excitement of IMF's annual research grant awards. In these days of reduced NIH funding it is so gratifying to know that our collective IMF donations are channeled to many bright young minds specifically seeking better treatments for myeloma.

Dr. Ken Anderson gave the first award to a brilliant young colleague of his at Dana Farber. He stirred the room with excitement when he explained that she has discovered and is exploring an entirely new approach to myeloma therapy, a new metabolic pathway and a possible new Achilles Heel to target neoplastic plasma cells. I don't know the pathway, but I do know the brilliance of Dr Anderson. Suffice it to say that if he is excited, then we should all be excited too!

Many awards followed, including the IMF's first junior award to a Chinese researcher. Junior awards are vitally important and serve to keep newly minted Ph.Ds from becoming discouraged at finding no funding, and leaving cancer research altogether. The discouragingly small percentage of grant awards compared to the large number of unfunded grant applications is a major concern at the NCI, and will most certainly worsen as fiscal insanity continues in Washington.

Thank goodness for the IMF. The money which we contribute has been supporting myeloma research funding every year since 1994.



Saturday (Day 2) started at 6:30 a.m. with a working breakfast of the International Myeloma Working Group. Lead by Dr. Brian Durie's uncanny ability to inspire trust and instigate discussion, the group discussed various guidelines and publications that were in the works. One of the objectives of these guidelines is to make Myeloma treatment uniform across the globe. Besides the completeness and holistic nature of the subjects discussed, it was impressive to see physicians (160) and researchers from different institutions and 31 countries coming together and collaborating to advance Myeloma research worldwide.

Today's ASH News Daily newspaper had an interesting article on Myeloma - specifically "The rule of Three to Treat Myeloma." It suggested that things that come in three are funnier, more satisfying or more effective than other number of things. While at first I thought it was building on Jim's write-up from yesterday regarding the use of three drug combination being more effective than a two drug combination or less toxic than a four, it was actually suggesting that the combination of Autologous Stem Cell Transplant (ASCT), Proteoasome inhibitors (Velcade, Carphilzomib) and immune modulatory drugs (Thalomid, Revlimid Pomalidomide) are changing the treatment, care and quality of life of Myeloma patients.

It is always refreshing to see Dr. S. Vincent Rajkumar of the Mayo Clinic challenging traditional thinking. During the first educational session of the day, Dr. Rajkumar indicated the goal of treatment should be increasing the quality and length of overall survival (OS) and not just the statistical improvement of progression free survival (PFS). He also reinforced the concept that Myeloma is a holding term for a conglomeration of different subtypes each requiring its own diagnosis, treatment and forecasting strategies.

The theme of the afternoon poster sessions was around the use of Revlimid or Velcade with or without high/low does Dex and/or with other investigational drugs to enhance efficacy of  relapsed refractory Myeloma patients. While most of them were promising, none, in my opinion, were breakthroughs.

Visiting the Millennium, Celgene and Onyx booths at the Exhibit hall, it was great to see the future looking, ambitious and personalized goals of these companies. Millennium indicated "WE ASPIRE TO CURE CANCER," Celgene's motto said "COMMITTED TO PUTTING PATIENTS FIRST WORLD WIDE" and Onyx had a display that said, "We share the hopes, dreams and worries of every patient we touch."

Since 1994, the IMF has awarded over 100 research grants to junior and senior researchers. This year also, the IMF awarded the Brian DNovis and Aki Horinouchi Research Grants to recipients from around the world. For the first time every one of the recipients was from China. The award ceremony included the stories of Myeloma survivors, driving home the point that Myeloma research and treatment is about the patient. These personal stories highlighted the need for a breakthrough, translational research!

Can you imagine what the world of comedy would look like if Peter Boyle lived to his 80s?
Can you imagine what the world of advocacy would look like if Brian D. Novis lived to his 60s?
Can you imagine what the family of Elijah Alexander would look like if he lived to his 40s?
Can you imagine what "Sandra," born in 1987, would be able to do if she is not going to be diagnosed with Myeloma in 2013 at a young age of 25?
Can you imagine....

Sharing the Hope!
Yelak from North Texas Myeloma Support Group

Day 1 ASH 12.8.12

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Today was the official start of ASH with the Exhibit Hall open, Posters displayed and Education talks. However, the highlight of the day for me was being able to attend the IMF IMWG (International Myeloma Working Group) breakfast meeting co-chaired by Drs. Brian Durie (Cedars Sinai) and S. Vincent Rajkumar (Mayo). The IMWG consists of 160 MM experts from 31 countries, researching projects and collaborating with each other to move MM treatment forward. They publish many of the Guidelines that oncologists follow in treating their patients. For example, there's a publication on Maintenance that was "pre-published" in Blood earlier this year and will be out soon.

Over 100 MM experts attended the breakfast and discussed future guideline publications currently in review including: Management of MM for Non-transplant Eligible Patients; Risk Stratification; Updates to Kyphoplasty & Bone Health; and Global Myeloma Cure. And in development: New Drug and new Methods of Action; PET Scan and Imaging; and Refractory/Relapsed Guidelines.

The IMWG also has future projects on their table including: Correlating features from 6000 cases of long-term (e.g. more than 5, even 10 years) Complete Remissions. And it was suggested that they should also look at patients who do poorly. Perhaps we can better understand why 25% of MM patients live less than 3 years. This may also produce a more consistent definition of High Risk MM patients.

It was truly a pleasure to watch this group (my second time) share information and work on behalf of MM patients.

Besides the IMWG meeting, I saw one presentation today, that by Dr. Antonio Palumbo (Italy), although there were several other excellent speakers as well. Fortunately I can read text of their presentations on the flight home. Dr. Palumbo spoke to the question of whether or not novel therapies have supplanted transplants but really spoke about many other topics as well. He said "A Complete Response (CR) predicts long-term Overall Survival (OS) and continuous treatment prolongs Progression Free Survival." To which Dr. Rajkumar said "PFS is meaningless and we should only be looking at OS. Of course, PFS is better with a 3-drug regimen instead of 2 drugs but there's not necessarily a clinical OS benefit."  [As background, Dr.Rajkumar generally treats his standard-risk MM patients with Rev-dx. He was also the lead researcher showing that low-dose Dex (40mg/wk) is just as effective as the 40/mg per day for 4 days on/off that I used to take.] Dr. Palumbo noted that there are 3 current major clinical trials trying to answer questions about transplants: early vs late vs not at all.

I checked out some of the posters and here are 3 examples I found interesting:

  1. Last year it was shown that there's a correlation between IMIDs (Revlimid, Thalomid) working better the more a myeloma protein expressed Cereblon. Today, a poster showed that for patients with del 17p, they also expressed less Cereblon...helping to explain why del 17p patients are considered high-risk;

  2. A Phase I study of Bendamustine-Rev-dx for 15 relapsed/refractory MM patients showed promising efficacy; and

  3. The PANORAMA trial of Panobinostat-Vel-dx for 55 pts relapsed and velcade-refractory showed an Overall Survival (CR+VGPR+PR) of 35% and Minimal Response/Stable Disease for another 54%.

Tonight I attended IMF Grant Awards reception where three MM patients shared their personal stories and the IMF awarded a number of $80K and $50K grants to researchers primed to make new discoveries benefitting MM patients in the future.

Definitely a nice way to end the day.


A Patient's Journey: They're Talking About ME!

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Attending an event like the American Society of Hematology (ASH) meetings is exciting and overwhelming. Physicians, researchers, nurses and drug company reps all racing from building to building. And it is a massive building. Five massive floors all connected by escalators and crosswalks. Next door sits the Georgia Dome, the crown jewel of one of the largest convention centers in the world.

Hope and promise ooze from every overcrowded meeting room. I have already run into people from France, Switzerland, Argentina, Spain, Canada and dozens of different U.S. cities, too. Watching over 400 clinicians and researchers line-up and wait to eat a brown bag lunch and sit on small, cramped chairs in order to hear the IMF's Dr. Durie and other top myeloma experts speak was amazing!

I'm one of ten myeloma patients and caregivers working with the IMF at this year's ASH. Our job is to use social media to help communicate and connect with our myeloma brothers and sisters; to pass along the exciting news, sites and sounds from this year's ASH in Atlanta.

This morning while I sat listening to Italy's Dr. Antonio Palumbo, I couldn't' shake an almost surreal feeling of irony. On one hand, I'm fascinated by all of the data and myeloma research. I'm hopeful as I gaze across a room that seats 6000 people and it is half full at 7:30 am on a Saturday morning. These people are dedicated. They work hard and care about their patients.

But sitting there, looking at all the graphs and charts and overall survival numbers, reality suddenly jumps-up and bites me in the ass.

These people are talking about me. My life living with a yet incurable cancer. And they are talking like I'm not in the room. Cold, matter of fact statistics remind me that I could die soon.

Or maybe not!  I snap out of my momentary funk long enough to hear how much longer some patients are living after being given therapy X,Y and Z. How much longer?  The Mayo Clinic's Dr. Rajkumar says up to a decade or more. Now that's progress!

Suddenly I'm back to my annoyingly optimistic self. RVD side effects?  No big deal!  And if I'm I'm tired and dragging, I'll take a nap! 

ASH is an important, amazing event. I'm just glad I'm here to share it with all of you!  I'll worry about tomorrow tomorrow.

Feel good and keep smiling! 


blogicon_ASH12_yelakb.jpgDay one of the 54th American Society of Hematology Annual Meeting and Exposition in Atlanta, GA was all about controversies. The controversy started with me indicating yesterday was day zero and Jack indicating today is day zero. I will let you decide who is right...

The highlight of today's ASH meetings (day one or zero depending on whose side you are on) was the IMF Satellite Symposium on "Controversies in Multiple Myeloma: Current Debates in Optimal Care". The topics covered ranged from an overview of Myeloma treatment landscape to defining and treating high-risk myeloma to what the treatment decision tree should be for Smoldering Myeloma to how to treat transplant ineligible patents and finally to what the role of Minimal Residual Disease (MRD) is in the treatment and prognosis of Myeloma.

I like these IMF yearly symposiums because they allow Doctors to have a civilized sparring of ideas which at the end hopefully will lead to clinical trials and better treatment consideration to patients.

Some of the takeaways from my perspective were:

  • You need to decide what the goal of treatment should be. While no breakthrough announcement was made at this session, I was impressed by the progress that was made at looking at treatment goal holistically from both the Myeloma and the patient perspective.

  • While the Myeloma diagnosis, treatment and care has exponentially increased in the last decade, it lags significantly behind other blood cancers. It really was refreshing and gratifying to see Drs. challenging each other and their colleagues to elevate the quality of care and pace of research for Myeloma.

  •  It was clear that the research for treatment of Myeloma is further going to the molecular level and laboratory research is as critical as what I call bedside research.

  • For the three case studies presented (a 70 year old male with CRAB based symptoms and increasing cytogenetic and FISH (standard, intermediate and high) risk abnormalities, the majority of the instant feedback survey respondents indicated they will choose a 3 drug combination of CyBorD (Cytoxan, Velcade and Dex) combination.
The final session of the Symposium was a debate between Drs. Jes�s San-Miguel and Philippe Moreau about whether Minimal Residual Disease (MRD) is a treatment goal or a prognostic marker. Dr. San-Miguel said Minimally Residual Disease will contribute both to a better definition of response and enable better monitoring of the efficacy of intensification and maintenance therapies... to avoid both under and over treatment. Dr. Moreau had a different opinion and indicated MRD evaluation is important but has no impact on current treatment and the goal of which should be risk-adopted treatment strategy.

Tomorrow starts at 6:30 a.m. with the IMWG breakfast and ends at 9 p.m. with the IMF Senior and Junior Grant Awards

Sharing the Hope!
Yelak from North Texas Myeloma Support Group

Interest is high in our disease

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ASH officially begins tomorrow (Saturday) but there were excellent pre-ASH lectures today. Interest is high in our disease and the rooms were full of people from all around the world, many conversing in languages I don't understand. The topic everyone was interested in was the progress we are making in myeloma treatment. Paul Richardson put those advances in excellent perspective when he commented that in the last decade there have been 8 FDA approvals for myeloma treatment. Prior to that there had been no new myeloma drugs approved for 30 years, but as he said, "we still have a long way to go". 

Regarding whether the novel drugs will replace transplants, he felt that they will not replace the procedure, but will serve to enhance it. There seemed to be near uniformity among all the speakers about the value of three-drug combinations....not two (less efficacy), and not four (too much toxicity), but three. 

Hakan Kaya from the Univ of Washington made a very interesting comment regarding allo transplants, considering that he is a transplant specialist. He feels that myeloma will be curable within the next ten years and is opposed to doing allos for myeloma patients because of the high toxicity, including mortality. He said it would be a tragic loss for these patients to die, "who might have lived long enough to be cured."  It is so nice to hear "cure" and myeloma spoken together in the same sentence!  We ARE getting closer.

blogicon_ASH2012_jacka.jpgToday is the day before the official start of ASH, otherwise know as Symposium Day.  I attended two of these symposium, one from 7am-11am and the other from 12:30-4:30 so it's already been a long day.

These symposiums were moderated by Drs Paul Richardson (Dana Farber) and Brian Durie (Cedar Sinai, IMF).  I was able to say "hi" and shake hands with both of them beforehand, and am so happy to have these world-renown MM experts on our side...and they're both such nice individuals.

Typically these symposia are set up with 4-5 other expert MM docs, and case studies or posed questions are asked that lead to their presentations. There's also interaction with the audience (500-750 attendees) via wireless keypads (same as used at IMF seminars) answering optional choice questions such as "how many MM patients attendees treat" (many answered >50) or which treatment would you consider such as "transplant or not for 70 yr old patient" (about 80% answered yes).

It was interesting how many of the presentations focused on subjects like risk stratification, gene expression profiling, myeloma clones, risk-adapted therapies and more...all confirming the belief that there really are "multiple" MM's.  You probably know about the ISS staging system for MM that looks at albumin and beta2 microglobulin to determine one's MM stage I, II, or III.  Dr. Johannes Drach from Vienna, Austria indicated that "Adding t(4:14) and del 17 factors to ISS staging provides additional prognostic information." I submitted a question to him about the effect of treatment on chromosome changes, and he answered that "Because this can happen, patients should have cytogenetic tests repeated at treatment relapse."

Another comment I found interesting was from Dr Haka Kaya (U of W, Spokane) who said "When my patient gets a bad rash from starting Revlimid 25mg, I've had success lowering the dosage to 10 and gradually working back up to 25 without the rash reoccurring".  Along those same lines Dr Robert Orlowski (MD Anderson, Houston) remarked "If you're using Velcade or Thalidomide and beginning to experience peripheral neuropathy symptoms, the best thing you can do is lower the dosage by 50% (or even stop all together) in order to reverse the PN."

 I was reminded that we'll hear more about Carfilzomib at ASH.  And there are 3 excellent new trials: Focus (Cfz vs Best Supportive Care), Aspire (Cfz-Rev-dx vs Rev-dx) and Endeavor (Cfz-dx vs Vel-dx).  All are accruing or finished accruing patients and should produce beneficial results in the future.

Sometime we hear about the "synergistic" combination of drugs, where 2 drugs together work better than adding them up individually.  Dr. Richardson said "These make good dance partners."

Dr. Jesus San-Miguel (Spain) when looking at PET-CT and MRI scans said "We cannot continue to just use x-rays where 30% of bone destruction needs to occur before the bone lesion can be detected." He also spoke about High Risk (>10%plasma and >30 g/L m-spike) Smoldering MM patients benefiting with early Rev-dx treatment in terms of delaying the onset of full-blown MM.

Dr. Durie showed an informative chart of MM patients from the Mayo clinic looking at 5 year Overall Survival Rates for age groups <65  and >65 yrs old:

2006-2010:   73%, 56% respectively

2001-2005:   63%, 31% respectively

indicating that novel therapies have had an even more positive impact for the elderly.

I'll end with a comment from Dr. Richardson who said "Before 2003 there had not been an FDA approval for Myeloma in 30 years. In the last decade, there have been 8 (!) but we still have far to go.

Long day but very inspiring. 


Thank you, Celgene

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As I was scurrying through the Atlanta airport last evening and glancing at signs and directions, I saw a blue mural about 15 feet long with an instantly recognizable graphic. All of us wiith myeloma can immediately identify the undulating pattern of rises and spikes of an abnormal SPEP. There it was! The sign was a large greeting to ASH attendees reminding us that myeloma never rests......and neither does Celgene, the company that brought us Revlimid and Pomolidomide. Thank you Celgene. Thank you the greeting, and thank you for what you do. You have saved and extended the lives of countless thousands of us with myeloma, and we are grateful!

 Jim Omel

What are the most important topics?

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ASH is an exciting time of new possible treatments and discoveries for those of us with myeloma. We all know that the next office visit or the next blood draw can throw us back into the awful uncertainty of relapse. Stable disease or even CR can never be a reason to relax and we must always keep in mind what our next personal treatment approach will be.

ASH gives us information to help guide those decisions. It can be so overwhelming, however, that decisions must be made right away on how to best use our limited time. What are the most important topics, and what do I most want to learn? How can I be the most effective advocate for my personal support group and for the thousands of our fellow patients who cannot be here?  My goal will be to gain a better grasp on the best treatments we have, and soon will have, for relapsed disease.



Sponsored by the International Myeloma Foundation (IMF) and representing the North Texas Myeloma Support Group (NTMSG) it has been 6 years since I first attended ASH in 2006.

Since then

  • The IMF has celebrated its 21st birthday
  • The NTMSG has celebrated its 15th anniversary
  • There are now many drugs and combination of drugs available for the treatment of Myeloma
  • Spearheaded by the IMF, many states have approved the Oral Drug parity bill
  • Human DNA has been documented
  • There are now many who are living with Myeloma for 20+ years
  • Space Shuttle program has been retired
  • Watson (a super computer) has won Jeopardy
  • I am able to send this blog entry from an inflight WIFI

Some of the things I am looking to report from the 54th American Society of Annual Meeting and Exposition in Atlanta, GA include: 

  • The IMF Satellite Symposium on "Controversies in MM: Current Debate in Optimal Care"
  • The IMWG Education Session on Keeping Pace with Advances in Myeloma 
  • The IMF senior and junior Grant Awards
  • Having 1:1 session with the giants of Myeloma research and treatment
  • Getting answers to questions I brought from my NTMSG members and
  • As well as the many Oral and Poster sessions.

Remembering all those we lost to Myeloma, I and the 10 other support group leaders - who are Doctors, Researchers, Advocates, Successful Business People, Bloggers, Teachers - expect to bring and share our experiences and learning from this year's ASH.

Sharing the Hope!
Yelak from North Texas Myeloma Support Group

Off to Atlanta

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I'm off to Atlanta, site of this year's ASH conference. Through the IMF, I'll be blogging each night about the highlights that occurred earlier that day.

As background, I attended my first ASH meeting 7 yrs ago and found it a bit like being diagnosed with Myeloma (nearly 18 yrs ago). The terminology and amount of information was overwhelming, understandably though since the intended audience is 20,000 researchers and oncologists, presenting and learning the latest updates for blood cancers, including myeloma (MM). I loved learning whatever I could understand because I was energized by all the great research being done. I learned so much at that first meeting and haven't missed an ASH conference since.

I also learned to prepare a few weeks ahead of time, creating my personal agenda of talks I want to attend. These presentations will typically be on clinical trial results rather than lab studies because these are more meaningful to patients currently in treatment or soon to be diagnosed.

Officially ASH runs Sat Dec 8 - Tue morn Dec 11. Each day consists of:

  • Exhibit Hall: Analogous to a trade show in Silicon Valley (my home) where pharmaceutical companies (nearly 300), medical suppliers, research & diagnostic companies, non-profits, and publications involved with blood cancers have a booth and provide product information. IMF has a booth where they interview MM experts for subsequent posting on their website.

  • Posters Hall: Each day over a 1000 new 5' x 3' posters are hung displaying research projects from selected Abstracts with details of Background, Method, Patient Demographics (could be Mouse Models), Results for both Responses & Adverse Side Effects, and Conclusions.

  • Oral Presentations: Nearly 1000 Abstracts are designated for oral presentations, typically 10 minutes of slides and 5 minutes q&a. Unfortunately, there are simultaneous presentations so no one can attend everything...thus the reason for working out your agenda before arriving at ASH.

Tomorrow (Friday), the day before the official start of ASH is designated as Symposium day, with Symposium sessions scheduled for 3-4 hrs in the morning, afternoon and evening. For example, the IMF symposium is tomorrow afternoon with a panel of Myeloma experts discussing various MM issues. While answers in these sessions cannot include information yet-to-be-released at ASH, it's always fascinating to see how MM experts have different opinions/recommendations to handle various patient case studies or posed questions for which there's no definite answer yet...welcome to the world of Myeloma. I'm sure some of those differences will also be heard at the IMF Monday night debate-Round 2. See the IMF website to listen live.

I'm with several other patients the IMF brought to ASH and together via blogging, facebook, and twitter, we hope to keep you well-informed from our individual patient perspectives. Of course, you'll have other vehicles to learn about ASH in the weeks that follow, including webinars, telephone conferences, seminars and more. Maybe your own oncologist will be at ASH. Take advantage of these resources and become your own best patient advocate.

Ready for 4.5 days of information.


Welcome to the IMF at ASH 2012

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The IMF is attending the 54th Annual Meeting of the American Society of Hematology (ASH) December 8-11, 2012 at the Georgia World Congress Center in Atlanta, GA. 

In addition to our signature webcasts on the most exciting research presented, members of the IMF staff and support group leaders will be reporting on all aspects of the meeting.

We look forward to bringing the energy of this meeting to you in the comfort of your home. So, follow us as we blog, film, Facebook and Tweet from Atlanta!

Until then, check out the events that we will be live streaming from ASH for your viewing pleasure. 

Abbie Rich
Web Producer

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This page is an archive of entries from December 2012 listed from newest to oldest.

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