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New Orleans, LA December 10, 2013 - As I'm sitting here in the New Orleans airport, flight delays have given me a chance to summarize my thoughts following all the meetings at the 2013 American Society of Hematology annual conference. Here are highlights for me and all multiple myeloma (MM) patients, in no particular order:

    • Monoclonal Antibodies  This seems to be the next area beyond proteasome inhibitors (e.g. Velcade) and IMiDs (e.g. Revlimid) that will yield drugs for the field of targeted therapies.  Daratumumab, Elotuzumab, and SAR-650984 are already in trials, but I saw others which have showed success in the labs and mouse models that are heading to Phase I clinical trials.
    • Fit/Unfit/Frail  A way of categorizing patients using geriatric studies that will help determine a best treatment for older patients while focusing on quality of life.
    • Smoldering Multiple Myeloma  There's a belief that, like other cancers, earlier treatment means longer term success. While the standard treatment for SMM is watch-and-wait, there's a portion of SMM patients that are high risk and will likely progress to full-blown MM within a couple of years. Perhaps treatment for high risk SMM patients can significantly delay the onset of MM, thus preventing earlier organ damage.
    • Cytoxan Instead of Melphalan  Since Cytoxan is less likely to damage bone marrow and blood counts, several presenters recommended using Cytoxan as the alkylating agent in treatment rather than melphalan.
    • So Many Options The list of treatment options since last year's ASH continues to grow now that we have carfilzomib and pomalidomide. And there seem so be clinical trials for every diagnosis phase...smoldering through high-risk MM, newly diagnosed through relapsed/refractory. Trials are so important because that's how we move possible treatment forward, so perhaps you want to ask your MM doctor if there's a trial that's beneficial for you.
    • Maintenance  This is still a hot topic. Most agree that maintenance (a better name might be "continued treatment") improves progression-free survival.  But does it extend overall survival? I heard one doctor say it best--"Maintenance certainly helps some...we just don't know which ones."  I guess you could say the same for any treatment (e.g. transplant). More maintenance studies are necessary before there's full agreement on the benefit.

That's it. Next year's ASH meeting is in San Francisco. Together we can help each other.

 -- Jack Aiello

Exciting View from the ASH Mountaintop

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New Orleans, LA December 10, 2013 - I was truly honored to be among the multiple myeloma support group (SG) leaders invited by the International Myeloma Foundation to attend this year's American Society of Hematology (ASH) conference.  Inclusion of some SG leaders at ASH (as it's called) has been done annually for a number of years, thanks to funding grants provided by the pharmaceutical industry.  The experience is an inspirational educational event for the leaders.  I liken it to going to the mountaintop, the annual "peak" of myeloma research reporting, from which the view this year is very exciting indeed.

This was the second ASH conference I have attended.  The first was in 2007, shortly after our Southeastern Virginia Multiple Myeloma Support Group was formed with the help of the IMF.   As Robin Tuohy, currently IMF's Senior Director of Support Groups, said in an interview back then regarding helpful IMF information on myeloma:  "The more I learned the more I felt empowered."   The same is true of the ASH experience.  The reports and professional discussion about promising new treatments educate SG leaders and give us great hope.   "Knowledge is power," as the IMF says.

Another benefit of SG leaders attending ASH is inclusion in the worldwide myeloma "team" created by the IMF.  That team includes doctors and researchers who participate in the International Myeloma Working Group, doctors who treat myeloma patients, members of the IMF's Nurse Leadership Board, the wonderful IMF staff, SG leaders, and the object of the team's efforts and existence - myeloma patients.  Team members have the opportunity to communicate with and learn from each other during ASH, thanks to productive events orchestrated by the IMF.  These events include myeloma survivors telling their compelling stories, the welcoming of new medical professionals to the team as they are given grants for promising myeloma research, and other events.

The first ASH conference I attended helped me to become a more informed SG leader.  Hearing expert presentations and learning the clinical trial methodology and vocabulary enabled me to digest future technical reports on myeloma research.  ASH participation also connected me more closely with the IMF staff and with experienced SG leaders with whom I could communicate for additional information and advice.  

This year's conference reinforced all of that and helped to provide a clear view of the horizon from the ASH mountaintop.  The abundance of 800+ detailed technical reports was initially intimidating.  Dr. Durie's informative preliminary guidance helped us to focus on topics that were particularly noteworthy.  And IMF's video interviews of participating myeloma experts provide excellent perspectives on ASH highlights.  For example, Dr. Morie Gertz of Mayo Clinic describes an exciting view:  he says that new drugs in the pipeline will continue to push the envelope and improve the prospect for patients with multiple myeloma so that functionally, they'll be cured.  And Dr. Kenneth Anderson of Dana-Farber echoes that view in his video on the IMF website, saying "cure remains very close on the horizon".    Here's hoping we'll soon be seeing that pot of gold at the end of the rainbow.

Jerry Walton
Southeastern Virginia Multiple Myeloma Support Group

Sharing Information and Hope with Support Group Members

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New Orleans, LA December 10, 2013 - For the last three years, I have been fortunate to attend the ASH meetings through a special educational grant to the International Myeloma Foundation.  The IMF program is a first of its kind to educate several support group leaders/patients, who then in turn take information back to their groups.  As a support group leader in Kansas City, the ASH experiences have been extremely valuable for me as well as the other members of our group.

Being diagnosed with myeloma is a major life-changing event.  Once myeloma is brought into your life, you are never the same.  It is the constant that walks with you throughout the rest of your life, sometimes quietly staying in the background, but ever-present. 

When newly diagnosed patients contact me, they are hungry for information and support.  After listening to their story, I assure them that many others are living full and active lives, all while walking the myeloma pathway.  Knowledge is power and the IMF does an excellent job of providing patients with all the tools they need to understand their disease.  I always suggest they begin by contacting the IMF hotline, an excellent way to start their myeloma education.

I am not a medical professional, but through my attendance at ASH, I can offer our members hope and encouragement as I relate information on newly developed therapies. Each year has brought new and exciting developments.

For example, this year at ASH, I had the good fortune to meet a myeloma survivor who, having been diagnosed with stage III myeloma and given a short time to live, chose to spend her remaining days enjoying life rather than submitting her body to the rigors of a transplant.  

She agreed to participate in a clinical trial using MLN-9708.  The response was outstanding as she achieved complete remission.  This does not mean that myeloma is out of her life forever, but it buys her more time until some other drug comes along.  It is also a wonderful example of the power of clinical trials for those who may not have otherwise considered participating.

I have been humbled by the dedication and commitment of the many brilliant minds working toward a cure for myeloma.  Their passion will help forge the way in continuing the advances in myeloma research.  I also deeply appreciate the IMF for the opportunity to attend ASH and for everything it does to support, educate and make life better for myeloma patients until there is a cure. 

Cindy Ralston
Kansas City Support Group Leader

New Orleans, LA December 10, 2013 - I had heard that what happens in New Orleans stays in New Orleans. This weekend as an IMF support group leader, I had the opportunity to attend the ASH convention here with the International Myeloma Foundation courtesy of some generous pharma grants. For four days I found myself surrounded by something in the neighborhood of ten thousand VIPs (very intelligent people). There were oncologists and hematologists, researchers, clinicians, and cancer experts from across the globe. I used to think I was a little bit smart!

ASH, the American Society of Hematology's Annual Convention, is where all these great minds collaborate, bringing together their research efforts and sharing the latest findings. The bottom line is that it doesn't stay in New Orleans. It trickles down and eventually may end up in your local oncologists' office or, courtesy of the IMF, perhaps your support group meeting. My blog is my small effort to present observations from one humble first-time ASH attendee who is a patient and support group leader in Tampa Bay. 

One of the IMF's goals is to raise awareness for myeloma in the sea of cancers. Multiple myeloma still finds itself obscured by the more "popular" cancers and many people are still unaware of its existence. The goal is to promote awareness without people actually having to contract the disease (not the preferred way to hear about it), with the end result being more research and funding to find a cure. I can verify that it is working. Every single ASH presentation on multiple myeloma was overflowing. One in particular yesterday required opening two overflow rooms and there were still people crowding around monitors in the hallways. 

I could try to address some of the specifics presented this weekend, but better summaries will be available on some of the IMF webcasts and other resources in the coming days. To be honest, many of the presentations are somewhat over a first timer's head. However I will share my impressions. Multiple myeloma is getting more attention and great things are in the pipeline. New therapies and drug combinations are producing results and showing even more promise going forward. Genetic advances are providing new insights on the disease and its treatment. 

This is still a cancer with more questions than answers. One of the things that always strikes and amuses me is that there is frequently as much disagreement as there is agreement among the experts in the field. We must continue to ask the questions and seek the ultimate answers. As patients it is critical that we be involved in our disease since there is frequently not one correct answer or solution.  

Finally, we need to be aware that a clinical trial may be a great option for us to consider as patients. Many people think of participating in a clinical trial as offering themselves up as guinea pig, but that is far from the reality. They provide variation on some of the best treatment options available and usually entail unsurpassed monitoring which you couldn't buy if you wanted to. Best of all, you might find your results being presented at a future ASH convention as part of the next step to a cure. 

Jim Barth
Tampa Bay Support Group Leader

ASH 2013: A Nonstop Learning Experience

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New Orleans, LA, December 10, 2013--I come away from my first ASH conference amazed at the scope of information presented. It has been a nonstop learning experience. 

Since ASH is geared to doctors and healthcare professionals, much of the terminology was difficult to follow as a layperson. But I couldn't help but recognize the commitment and determination of these doctors and researchers to find a path to better myeloma treatments and, hopefully soon, a cure.

As ASH kicked off on Friday, the International Myeloma Foundation's symposium discussing best options for myeloma treatment provided an opportunity to hear BOTH sides of an issue and to question the experts. How often do we get to do this? Much talked about was not new, but to see so many doctors, both presenting and here to learn, (some so young I certainly thought they were teenagers) was encouraging. There is comfort knowing that myeloma is being addressed by many.

Some of our lunches and dinners were working times to discuss and clarify what we learned during the various presentations. Saturday, during lunch, we learned that there are many ways to look at an issue and that it's okay to step out of the box. Isn't that what the BSRI is?  We all need to do that at times.

Even though my personal reason for championing a cure for myeloma has long since passed away, my support group leaders and members have become like family, and as much as I would miss them very much, a cure would mean no need for the group. I vote CURE.

As ASH continued, we support group leaders were privileged to be invited to the IMF's international journalists' workshop where the presentations were delivered to a non-medical expert audience, which made the information clear and easier for us to understand. THANK YOU!!

I'm anxious to share what I learned here with anyone and everyone I know.

As I head home physically exhausted, I am encouraged and enlightened by the information gleaned here. New treatments, new ways to use existing treatments, more pharmaceutical companies investing in myeloma research and the IMF's Black Swan Research Initiative.
There is much for the myeloma patient to be encouraged by and hopeful for.

Thank you IMF for this wonderful opportunity.

God bless you all, have strength and hope.

Anne Pacowta 
Florida Regional Director of Support Groups
New Orleans, LA December 9, 2013--Wow - what an experience!  The American Society of Hematology meeting came to a close in New Orleans today and it exceeded my expectations.  I'm so grateful for the opportunity to have been able to attend; many thanks to the International Myeloma Foundation and the sponsors of their educational programs that made this possible.

Although I didn't always understand the highly technical details of every presentation, I was amazed by each session.  Amazed by the researchers' passion, the healthy debates and challenges, and how much interest there was from thousands of their colleagues. Every myeloma session was overflowing and secondary rooms had to be set up to handle the crowds!  You had to arrive very early just to get a seat.  Who would think that a cancer that affects 1% of cancer patients would draw so much attention? I can't wait to get home to share the knowledge I gathered, convey the experiences from this massive conference, and spread the excitement I feel.

I came here with a keen interest in the latest opinions on maintenance therapy for patients like me who've been through a transplant.  There was spirited and healthy debate on this topic at several sessions - some doctors totally in favor of continued therapy even after a remission is achieved and some say it's not necessary for everyone.  Check out just one of the conversations on this during the IMWG webcast replay at myeloma.org. 

I'm also continually impressed by the entire IMF team.  The leadership of Dr. Brian Durie and Susie Novis is very evident and the myeloma community is so lucky to have them and the entire IMF staff.  Their passion is never-ending and their encouragement is contagious!  I know they won't stop until they find a cure.   

Continually encouraged, 

Linda Huguelet
Chattanooga Multiple Myeloma Networking Group

Learning at ASH How to Travel from Fear to Hope!

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YelakBiruBlog.pngNew Orleans, LA December 8, 2013--Continuing to give a Support Group Leader's perspective from the 55th Annual Meeting and Exposition of the American Society of Hematology (ASH) in New Orleans... 
At the end of a long day when I got to the hotel on Friday night, Anderson Cooper's special "To Heaven and Back" was showing on CNN. Weather you believe in an "after life" or are religious, the message to me was don't let your situational fear control your actions. 
On Saturday evening on CNN Heroes, whether it is helping kids having to dodge bullets for the rest of their lives is their life, helping foster kids overcome the fear of loosing their only prized possession - a doll shared among foster sisters,  or verbally disarming a fearful gunman that can potentially kill dozens of kids, HERO after HERO was helping others overcome their fears. 
During a hosted lunch on Saturday, I had the opportunity of listening to Erik Wahl, a graffiti artist turned motivational speaker. Erik artistically walked everyone through the principle of why we can't be innovative operating from a position of fear, and how operational efficiency WILL NOT lead to innovative myeloma treatment approaches. 
He explained that you have to Focus, Commit and Adopt in order to transition from fear to hope.
YelakBlog1.jpgDuring Saturday night's International Myeloma Foundation (IMF) Brian D. Novis Senior & Junior Research Grant Awards Reception, Dr. Brian G.M. Durie, President and Co-Founder of the IMF, said the goal is to help patients and their families to transition from Fear to Hope
Jack Aiello, a 19-year myeloma patient who spreads and shares hope with others through his leadership of a support group and through international advocacy, shared his story of hope at the Awards Reception. Myeloma is a cancer on the move, according to Jack. In order to continue to have hope, patients need to stay on top of their choices. In this day and age where our world is connected and continually shrinking, there are many ways of being able to do that. 
What has impressed me most so far, among many things,  is the accessibility of these world-renowned doctors and researchers that have dedicated their life to myeloma. We were able to have a one-on-one discussion with Dr. Phillip McCarthy on the ASH exhibit halls, Dr. Kenneth C. Anderson and Dr. Robert Kyle  were able to attend and spend time with patients and support group leaders at the IMF Grant Reception. As always, Dr. Brian G.M. Durie is accessible not only through ASH-related events but, also through IMF's Hotline at 1.800.452.CURE (2873) or TheIMF@myeloma.org
One of the things I am observing evolve from year to year at these ASH conferences is increased collaboration by myeloma centers and doctors. This , I believe is driven by trust.  Trust in this highly connected and data-driven world, as Erik put it, is the currency of choice. 
More to come.
Sharing the Hope. 
Yelak from North Texas Myeloma Support Group
There is no better place to host a medical convention than New Orleans.  The sights, the sounds, the smells and the people invigorate you. I have the best of both worlds here. During the day I am surrounded by the giants of hematology attending the annual meeting of the American Society of Hematology (ASH).  I feel like an anxious child at a theme park patiently waiting to see the "characters" that I respect and admire. And when I see one of those special people I want a picture as a souvenir.

 Today I had my picture taken with the @MayoMyeloma tweeters that I faithfully follow (@VincentRk and @myelomaMD) and shook hands with the much respected @BrianDurieMD.  I still have a list of other "characters" I would love to meet and shake hands with and just maybe I will be able to sneak in a quick photo shoot  for my scrapbook. 

Friday I listened intently as the presenters defended their points of view on critical issues in myeloma at International Myeloma Foundation's Satellite Symposium. But at night I celebrated life with my friends and fellow myeloma survivors. We eat,  drink, listen to some good music and enjoyed each other's company immensely. I cherish the time that medical science has afforded me.  I choose to live in the moment and to make lasting memories. 

While at ASH 2013 I have learned that myeloma is a heterogeneous disease and there is not any one-size-fits-all treatment option.  I have learned that new definitions of myeloma need to be developed as more is being discovered about the various sub-types of this disease.  I have learned that not all myeloma specialists agree on what treatment options are the best, but they do challenge each other to defend their opinions.  

What's the role of maintenance therapy?  Do we need to transplant early or can we wait until the first relapse? Do we use early integration of new therapies in the salvage setting? When should we treat a patient with smoldering myeloma?  Should Melphalan be used as part of the induction therapy for elderly patients?  Check out the event slides to see some of the varying opinions. 

As I listened to the point-counterpoint presentations I realized how important it is to be an informed patient. I know that I must educate myself so that I can ask questions and become a part of my medical decision making team. I also know I must respectfully ask my doctor to defend his recommendations for me, to explain what my treatment goal is and to ask further delving questions. 

I am fortunate that I have this opportunity to attend ASH and listen to these debates and presentations in person. But it's nice to know that patients who can't attend ASH can view some of these same debates and presentations live-stream, follow twitter feeds, read patient blogs and follow updates from various publications. http://myeloma.org/IndexPage.action?tabId=0&menuId=0&indexPageId=452&parentLinkId=7668&categoryId=0&gParentType=nugget&gParentId=1&parentIndexPageId=1 

Sitting in today's session I also realized what my role as a patient should be in finding a cure for myeloma.  Answers about what the best treatment option is for a particular situation cannot be found outside of clinical trials. So my first role as a patient advocate is to enroll in appropriate trials and encourage others to do so too!  This may take some educating.  Cancer patients need to learn how cancer trials are designed so they feel more at ease in participating in one. I also feel it is my responsibility to give tissue samples and share my data with others. 

It is past midnight and tomorrow is the official opening day of #ASH13. I must get some sleep so I will be ready to take in an share what I will learn in tomorrow's sessions.  Sweet dreams! 

-- Cindy Chmielewski

There was a huge turnout Friday at the American Society of Hematology (ASH) conference session on Best Options for Myeloma Treatment. Nearly a thousand medical professionals attended. Myeloma experts from around the world addressed and debated best treatments for myeloma at various stages of the disease.  

A key focus was emphasis on the need for more detailed data on myeloma to clarify various subtypes and tailor treatments accordingly. Robin Tuohy of IMF and Cindy Chmielewski of the Philadelphia Myeloma Networking Group hit the nail on the head with their tweets:  "Myeloma is not one disease" and "Myeloma is a heterogeneous disease. It's not one size fits all," respectively.  As Dr. Vincent Rajkumar of Mayo Clinic said, one of the biggest problems in multiple myeloma is that we don't have adequate definition of subtypes yet. We need to get more specific--to clearly define those categories of myeloma that are responsive to particular medications, such as immunomodulatory drugs (thalidomide, lenalidomide, pomalidomide) and other drug types.

IMF's Black Swan Research Initiative® and its effort to develop tools that will measure minimum residual disease (MRD) will help immensely in this effort.  Bottom line:  myeloma experts here are very excited about new and emerging treatments, and they want to maximize their effectiveness by aiming them at the right targets --hopefully someday leading to cures for the disease, in all of its subtypes. 

-- Jerry Walton
New Orleans, LA December 7, 2013--Today was the official start of the annual meeting of the American Society of Hematology (ASH) with the Exhibit Hall open, posters displayed and education talks presented, which is what I'll start with. This session featured three renowned myeloma experts, each speaking for about 30 minutes: Dr. Ola Landgren (National Cancer Institute), Dr. Maria-Victoria Mateos (Spain) and Dr. Phillip McCarthy (Roswell Park Cancer Institute, Buffalo, NY). All three doctors summarized what is known at this instant in time, pending future announcements at ASH.

Dr. Landgren discussed MGUS and smoldering myeloma (SMM) in terms of biological insights and early treatment (contrary to the current watch and wait recommendation). I found it interesting that he mentioned one could think of myeloma as a metastatic disease that evolves from a Solitary Plasmacytoma (passing through the MGUS and SMM phases). While MGUS only has a .5-1%/yr progression to full-blown myeloma, SMM is much higher at 10%/yr during the first 5 years. All of this says that many of us had precursors to myeloma before we were diagnosed.  

So one might ask if earlier treatment would have delayed the onset of full-blown myeloma. This is a relatively new area of investigation with several clinical trials examining possible answers.  These trials are incorporating difference risk stratifications for SMM patients so that ultimately High or Ultra-High Risk SMM patients may benefit with early treatment whereas MGUS and standard-risk SMM patients may still fall into the watch and wait category. We'll see what happens as these trials progress.

Dr. Mateos focused on summarizing treatments available for non-transplant ("elderly") patients. She indicated the importance of evaluating such a patient as being Fit, Unfit, or Frail.  All the well-known treatments are available to "Fit" patients, while "Unfit" patients may benefit by lower dosages and "Frail" patients should avoid Melphalan.

I found several posters of interest.  (You can actually look up the abstract for these posters by going to www.hematology.org and looking up the poster number, which I'll identify within square brackets [ ]. The actually poster may contain updated information.)

• Poster [1888] suggested that if a solitary plasmacytoma has abnormal PET-CT scans and serum Free-Light-Chain values, perhaps myeloma treatment should start after appropriate surgery/radiation.

• Poster [1933] demonstrated that Carfilzomib plus Melphalan and Prednisone for newly diagnosed elderly patients is a promising therapy. In a Phase I/II trial, it showed an Overall Response Rate (ORR) of 91%, including 10% Complete Response (CR) and 45% Very Good Partial Response (VGPR).

• Poster [1940] looked at Pomalidomide plus Velcade plus Dex in patients with relapsed/refractory myeloma (RRMM). This PVD regimen showed ORR of 90% for patients refractory to Revlimid.

• Poster [1974] showed Bendamustine, Velcade and Dex (BVD) for RRMM patients an effective treatment with ORR-77% (CR 20%, VGPR 20%)

• Poster [1979] explained that treatment with Pomalidomide directly after being treatment with either Revlimid or Thalidomide actually has lower response rate and shorter treatment duration.

Tonight I attended International Myeloma Foundation (IMF) Grant Awards reception, where four myeloma patients shared their personal stories and the IMF awarded a number of $80K and $50K grants to researchers primed to make new discoveries benefitting patients in the future.

Definitely a nice way to end the day. 

-- Jack Aiello

The IMF at ASH 2013

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