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December 2013 Archives : The IMF at ASH 2013

Thanks for the Memories

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New Orleans, LA December 10, 2013 - It's not happiness that brings you gratitude, it's gratitude that brings you happiness. Today I am a very happy girl. As I sit in the Louis Armstrong Airport waiting for my delayed flight home to Philadelphia from the American Society of Hematology's Annual Meeting (#ASH13 on social media) I am reflecting back on my experience. I have a lot for which I am grateful.  

I am grateful for the educational grant that enabled the International Myeloma Foundation to bring 12 patient advocates from across the United States to the American Society of Hematology's Annual Meeting.

I am grateful that IMF asked me to be one of those patient advocates this year and report from #ASH13.

I am grateful for the progress that has been made in treating myeloma in the last decade; because of these advances I am well enough to travel alone halfway across the country five years post-diagnosis. 

I am grateful for the many discussions I had with my fellow advocates during our time in New Orleans. These conversations both formal and informal enlightened me on treatment options, clinical trials, side effect management, advocacy, and the best place to get a muffuletta. 

I am grateful for all the researchers that are bringing new treatment protocols and drugs to clinical trial. The passion I felt during the presentations of medical research abstracts and at the satellite events held throughout the conference was contagious. 

I am grateful to everyone who has helped fund research, from the individual patient who held a grassroots bake sale to all who lobbied Washington to restore government funds for medical research.

I am grateful to my fellow myeloma warriors who have participated in clinical trials; without them we wouldn't have made any progress in our war against myeloma or have research abstracts to present.

I am grateful for the education the International Myeloma Foundation has provided me, from the new patient resource packet I received in the mail days after my diagnosis to the ongoing educational webcasts. The IMF hosted 3 live webcasts from #ASH13 this week and there are several recorded #ASH13 interviews posted on their website.

I am grateful for social media that has allowed me both to learn from others and share what I learned through Twitter - @MyelomaTeacher #ASH13IMF (I was in the top 5 influencers at #ASH13), IMF blogs, and a Patient Power interview.

I am grateful for my family and friends who continue to support me in my efforts to be a patient advocate.

This list could go on and on, but it's just about time to board my flight. 

I plan on using what I learned to help others at my local in-person support group, in the several online communities of which I am a member, in my mentoring of newly diagnosed patients, by participating in myeloma related webcasts, and through continued engagement in social media.

Remember to use the following link to get all the myeloma highlights from #ASH13.               http://myeloma.org/IndexPage.action?tabId=0&menuId=0&indexPageId=452&parentLinkId=7690&categoryId=0 

Goodbye New Orleans, but thanks for the memories!

Cindy Chmielewski
AKA @MyelomaTeacher

Cutting-Edge Research: How Fast Might It Reach Us Patients?

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New Orleans, LA December 10, 2013 - Last time I wrote about exciting new research being done to help overcome multiple myeloma's ability to become drug resistant.  I shared how researchers had discovered how adding an deacetylase (HDAC) inhibitor with a proteasome inhibitor re-sensitized resistant cells, allowing proteasome inhibitors like Velcade, Kyprolis and ixazomib to work.

I went on to share how a promising new HDAC inhibitor, panobinostat, faces an uphill battle for FDA approval, because it doesn't work very well by itself.  And even though it clearly enhances the effectiveness of existing myeloma drugs, the FDA likes to see single-agent activity before approving most drugs.

The first immunotherapy drug for multiple myeloma, elotuzumab, faces a similar challenge.  It works well when combined with Revlimid, but not on its own.  That's why doctors and researchers here are so excited about daratumumab. Unlike elotuzumab, daratumumab does seem to work by itself or in combination with other myeloma drugs.

Immunotherapies are a hot topic in cancer research.  One could argue that myeloma immunotherapy research has lagged behind therapies already being used to fight breast cancer and melanoma.  But drugs like daratumumab could help change all of that.

Anti-cancer vaccines are another type of immunotherapy.  The ImMucin therapeutic vaccine for multiple myeloma shows exciting promise in early studies.  Therapies like genetically modified T cells are also making news.

When will any of this cutting-edge research reach patients?  Well daratumumab and possibly elotuzumab may only be a few years away.  Since they are a new class of drug, the FDA is more likely to fast track their approval.

Myeloma vaccines, modified T cells and other space age therapies may still be a decade away.  But maybe not!  Research in the field is advancing at break-neck speed, aided by high powered computers and willingness of researchers to share their data.  What used to take ten years now may only take five.

So stay healthy and hopeful!  Eat well, exercise and get plenty of sleep.  And a few prayers -and keeping your fingers crossed- can't hurt!

Feel good and keep smiling!  

-- Pat

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New Orleans, LA December 10, 2013 - Monday is "myeloma day" here at ASH.  Non-stop oral presentations about myeloma research from 7 a.m. to 7 p.m.  My day started listening to four presentations focused on overcoming drug resistance.  

It sounds like they're making progress. But I'll be honest. Even though I read and write a lot about multiple myeloma every day, some of the research at the cellular level is way over my head.

Even so, I was able to learn that researchers are now able to overcome myeloma's resistance to proteasome inhibitors (Velcade, Kyprolis, ixazumib) by adding an HDAC inhibitor to the mix.  What the heck is an HDAC inhibitor?  That's where I start to get lost in the specifics.  But an example of a HDAC inhibitor would be panobinostat, a new experimental drug that's in Phase III trials.

Apparently, adding panobinostat to any of the proteasome inhibitors effectively re-sensitizes myeloma resistant cells. In other words, the combination of certain HDAC inhibitors helps drugs like Velcade work again.  

Great news, right?  It's this type of research that has excited myeloma experts for years.  But there's a catch.  This research is being done in mice and human cells in the lab, not in people.  

How is it working in multiple myeloma patients?  Reviews are mixed.  Like a number of other exciting new drugs, the tendency is for them to work better in the lab than in us.  No one is really sure why.  Maybe scientists haven't found just the right mix yet. 

Based on what I've read and experts I've interviewed, panobinostat therapy works.  Here come's that "but" again. There may be a problem getting the drug approved by the FDA.  Why?  Because it doesn't do much by itself.  It needs to be combined with another existing myeloma therapy.  And thus far, the FDA has only approved drugs that show significant single agent activity.  

I'll post more about some of the exciting new therapies being reviewed here at ASH next time.

Until then, feel good and keep smiling!  

-- Pat

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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

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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
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New Orleans, LA December 9, 2013 - Attending the American Society of Hematology (ASH) annual meeting as a patient is a hopeful, yet exasperating experience.

The current meeting in New Orleans is my fifth ASH. Ironically, the first ASH I attended was here, too. I remember being amazed by the size and scope of the event; so many working so hard to help blood cancer patients live longer.  

Then as now, I found myself baffled by the dichotomy of research's progress. On one hand, you can almost feel the excitement in the air over the burgeoning development of immunotherapies and innovative, new pathways researchers can use to help destroy myeloma cells. On the other hand, doctors are still struggling with the most basic questions about when, with what and how much to administer to patients.

This would be understandable if I were referencing newly FDA-approved drugs like Kyprolis or Pomalyst. But I'm not. At the first event here at ASH, the International Myeloma Foundation's symposium, Critical Issues Need Answers: Providing Best Options for Myeloma Treatment in 2013, a panel of six world-renowned myeloma experts pleaded for more data about how to use Revlimid and Velcade.  Revlimid and Velcade? They were approved seven or eight years ago!  Did you know that Velcade is still not FDA-approved for use as maintenance therapy? Call the company and no one can tell you how often to dose patients post transplant, even though it has been used to treat patients now for over a decade.

Think of it this way. Drug company and academic researchers are frantically trying to discover the next, best thing. The result? Myeloma science is outpacing our doctors ability to apply it.  

Going back and doing clinical trials to help doctors understand the "who, when and with what" isn't sexy. It's also expensive and sometimes difficult to enroll patients in trials. Many patients are more interested in enrolling in cutting-edge trials than how much dexamethasone works best with Revlimid or Velcade. But both types of trials are important for our futures and quality of life.

I'm looking forward to sharing both the hopeful--and more challenging aspects of ASH--over the next few exciting days here in New Orleans.

Feel good and keep smiling!

--Pat   

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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
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New Orleans, LA December 9, 2013--As I mentioned previously, today is Myeloma Monday, meaning the first oral presentation began at 7 a.m. and the last one ended at 6 p.m.  Yes, we had some breaks, but I used them to review the new posters (none will be mentioned here) and walk to different rooms in the large Convention Center. Each oral presentation is about 13 minutes with 2 minutes of questions and answers. The 15-minute time limit is monitored very closely.

Here's a sample title of the first presentation I attended (remember, it's 7 a.m.): "Novel AKT Inhibitor Afuresertib in Combination With Bortezomib and Dexamethasone Demonstrates Favorable Safety Profile and Significant Activity in Patients with Relapsed/Refractory Multiple Myeloma." The Power Point 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 densely written 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 bortezomib as Velcade) and try to interpret the results.

In these trials, I look for Clinical Trial Phase (the one above was at Phase I), "n" representing number of patients, Responses (e.g. Complete Response, Overall Response), Survivals (e.g. Progression Free Survival, Overall Survival), Adverse Events/toxicity (both hematologic-blood and non-hematologic) and Conclusion/Summary. Phase I trials consists of a handful of patients to determine Maximum Tolerated Dose (MTD); Phase II, with roughly 50-100 patients, examines treatment efficacy; and Phase III, with several hundred patients, compares that new treatment/drug with a current standard of care. Finally, I look at who the trial is intended for such as newly diagnosed patients or relapsed/refractory myeloma (RRMM) patients.

Just a few of these talks are mentioned below all for RRMM patients unless otherwise noted:

Drugs I heard about today in Phase I trials include:

  • SAR650984...CD38 monoclonal antibody that has single agent activity.

This adds to other monoclonal antibodies Elotuzumab and Daratumumab, definitely a hot area for MM research.


Phase II trials I found interesting include:

  • ARRY-520 (KSP Inhibitor) which had single agent activity combined with Vel-Rev or just Dex.  Most interesting was the detection of a biomarker called AAG that can help determine if a patient will respond to ARRY-520.
  • Vel-Mel-Pred 9 cycles followed by Rev-dex 9 cycles versus alternating each cycle for newly diagnosed elderly patients.  Results didn't seem to matter overall but it might for a given individual. 
  • Oral MLN9708 (Ixazomib) + Rev + Dex is an effective all-oral regimen containing a proteasome inhibitor and IMID for newly diagnosed patients.
  • Carfilzomib + Rev + Dex followed by Rev maintenance in newly diagnosed patients.
  • Carfilzomib + Cytoxan + Dex for newly diagnosed patients
  • Pomalidomide + Dex for high-risk del 17p or t(4:14) patients

Phase III trials of interest were:

  • Velcade Induction followed by transplant followed by Velcade maintenance 
  • The measurement of PFS2 was defined as Progress Free Survival through relapse and another treatment therapy.  PFS2 was proposed to show in a large French Phase III study that Revlimid maintenance didn't result in Overall Survival improvement over no maintenance.  However, this was argued by other myeloma experts. Maintenance still needs more study.

That's enough for now.  There are so many others I attended and even more I couldn't attend since there were 835 Myeloma abstracts at this year's ASH.

While typing this, I'm watching a wonderful IMWG Conference Series live webcast, "Making Sense of Treatment," featuring myeloma experts Drs. Brian Durie, Antonio Palumbo, Joseph Mikhael, and Ola Landgren.  Among these four experts, there's both agreement and disagreement.  We all want the "best" treatment and get frustrated not having definitive answers.  

Well, let me tell you what's worse--having only two treatment options: Melphalan-Prednisone or VAD induction + SCT, and told the average life-span is only 2-3 years. That was my choice when I was diagnosed 19 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.

-- Jack Aiello
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I've been attending ASH with the IMF for 7 years, so this is my 8th ASH!  Every year I am inspired and thankful to all of the researchers who are presenting oral presentations and posters on myeloma.  Every year I gain more hope that myeloma will be cured!  Yes, I am using the word "cure" because the IMF is leading the fight and I KNOW they will accomplish that goal.  All you need to do is read about the IMF's Black Swan Research Initiative and know that the team is "working" on MRD-Zero (Minimum Residual Disease).  

I was diagnosed in 2000, when treatments were limited to VAD (vincristine and doxorubicin)  and we kept stem cell transplant "in our back pocket" as our big gun option.  Over the past 10 years, I have seen 8 new treatments approved in the United States.  That's more than in the last 50 years!  

Today, I was most excited to hear all the different options there are to attack myeloma.   The IMF Symposium on Critical Issues Need Answers: Providing Best Options for Myeloma Treatment in 2013 gave us case studies and debates about high risk smoldering myeloma. The question was: to treat or not to treat?  A hot topic of discussion.  

I was particularly interested in the discussion on maintenance therapy.  I've been on Revlimid for eight years since the Expanded Access Program (EAP) 2005.  I have a great quality of life and my takeaway from this presentation is to stay on treatment.  But I appreciate the debate.

Tomorrow our group will attend the Education Session featuring
  • Ola Landren on Monoclonal Gammopathy of Undetermined SignificanCe (MGUS) and Smoldering myeloma:  Biological Insights and Early Treatment Strategies
  • Maria-Victoria Mateos:  How Should We Treat Newly Diagnosed myeloma patients?
  • And
  • Philip McCarthy Jr: Strategies for Induction, Transplantation, Consolidation, and Maintenance for Transplant Eligible patients.
But what I'm most excited about for Saturday is the IMF Grant Reception, where I'll be joined by other myeloma patients to share stories with the audience about our lives today. 

-- Michael Tuohy

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
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New Orleans, LA December 8, 2013--Today was a busy one, having just returned from a meeting that ended at 10 p.m., but more about that later.  I'm sure a highlight for any presenter at the annual meeting of the American Society of Hematology (ASH) is to be selected for a Plenary session. This is a 30-minute oral presentation with no other competing talks. As such, several thousand attendees are in the audience.

One of today's Plenary session talks was given by Dr. Thierry Facon from France about Phase III trial results for 1,623 (!) newly diagnosed myeloma patients, at least 65 years old, who were randomized into 3 study arms: (A) Revlimid plus dexamethasone until disease progression; (B) Revlimid plus dex for a fixed 18 cycles (72 weeks); and (C) Melphalan-Prednisone-Thalidomide for a fixed 12 cycles (72 weeks).

Results for Arms (A), (B), and (C) respectively showed:

  • Overall Response Rate (%): 75  73  62
  • Progression-Free Survival (mos):  26  21  21
  • Median 4-yr Overall Survival (%):  59  56  51

While some of the numbers may look close, there are important differences as you drill deeper.  For example, PFS curves for (A) and (B) were very close through 18 months, but then the curve separation became apparent and growing.  Another factor supporting (A) as the preferred treatment was that (A) had a 1-year improvement over the others in a measurement called Time-To-Progression. And while Arms (A) and (B) both had about 28% grade 3-4 neutropenia (low white count), Arm (C) had 45%.

I've highlighted a few posters [abstract number] below:

  • Poster [3178] compared outcomes for Velcade-Cytoxin-Dex (CyBorD) versus Velcade-Revlimid-Dex (VRD) for newly diagnosed patients. Besides comparable PFS (70% vs 68% at 2 yrs) and OS (92% vs 85% at 2yrs), cost was also examined.  The cost for 4 cycles CyBorD versus VRD was $37K vs $67K.  Both costs are outrageous but I'm glad to see studies looking at this.
  • Phase III study in Poster [3189] showed that Perifosine with Velcade plus Dex in patients previously treated with Velcade showed no benefit in PFS or ORR. It's also useful to eliminate some drug usage.
  • Poster [3209] examined responses to Revlimid in newly diagnosed patients with and without continuous therapy. It demonstrated that patients stopping Revlimid after 1 year and achieving a VGPR or better can result in long-term (4 yrs) disease control and can be considered a treatment strategy. 

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.  A summary of several ASH highlights was presented along with future goals of developing better treatments, perhaps at earlier diagnosis, and build upon the IMF's Black Swan Research Initiative to have better testing tools (Minimum Residual Disease) that more accurately determines patient responses. 

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 7 a.m. to 8p.m.  And then I'll be watching the International Myeloma Working Group (IMWG) conference series tomorrow evening (check the IMF website myeloma.org for more details).

It's late and I have a 5:30 am wake-up call.  


-- Jack Aiello
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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. 
http://tinyurl.com/ox8aao8

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

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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
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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

Inspiring Purpose, Measuring Performance!

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Thursday we heard the news of Nelson Mandela's passing. Not only was Mandela a survivor but he was also a fighter - just like myeloma patients. Mandela didn't embark on this life-long fight for his life and the freedom of South Africans and the teaching of forgiveness by himself. As with any struggle --  political, social, personal, financial or medical, a lot of people that didn't get to benefit directly from his success invested time, money, effort and other hard and intangible capital. But, Mandela inspired purpose. 

am hoping the 800+ medical practitioners that attended Friday's IMF Satellite Symposium would be inspired by the thousands of myeloma patients, families, caregivers and extended families, present and past, to dedicate their practice, research and $$ to finding a better treatment option for myeloma patients. I would be good with a Cure too! 

During last year's ASH, #ASH12, I heard Dr. Jesus San Miguel say "...compared to other blood cancers, myeloma is about 10 years behind in clinical and laboratory research." That may be the reason we  - medical practitioners, patients, caregivers, support group leaders - are asking the same questions that were asked when I first attended ASH many years ago and similar questions that were asked last year. 

This is not to say that the life expectancy, treatment options, interest and research for looking at managing myeloma differently in the last several years hasn't increased. There are hundreds of abstracts, poster sessions and oral presentations at this year's ASH that talk about myeloma. Global collaboration seems to have increased exponentially through advocacy and organizations like IMF being able to break global barriers. Drugs in the pipelines are increasing. Buzz around the Black Swan Research Initiative® continues to grow. Friday, Onyx and IMF announced a major collaboration effort to significantly advance and accelerate BSRI®. 

There are several dozen #ASH13 presentations related to BSRI. Specifically around MRD-Zero (minimal residual disease-zero). In my non-medical opinion, the benefit of this type of research will enable researchers to not just compare drug outcome with other "standard of care" drugs, but, inspire them to strive for something breakthrough. I am ready for myeloma patients and families struggling to balance quality of life with survival, side effects with response, etc. to start going beyond the statistics and the numbers. I am hoping BSRI is the first step towards that individualized treatment. 

Stay tuned for more in the next few days as the IMF Social Media team reports from ASH13 in New Orleans. 

Sharing the Hope!

Yelak from North Texas Myeloma Support Group


Day One at #ASH13

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Hi Everyone!

Every day my blog posts will start "This was the best day!"  Because every day at the annual meeting of the American Society of Hematology (ASH) is full of hope for myeloma patients!  Hope for our futures, for new treatments, better quality of life, longer overall survival, and fewer side effects.  If you want a shot of hope, read my blogs and follow me on Twitter:  @IMFsupport.

"Today was the best day!"  Today, thanks to the IMF, we heard some of the top myeloma experts weigh in and give the "yes" side and the "no" side of various debates.  The title of today's program was:  Critical Issues Need Answers:

Providing Best Options for Myeloma Treatment in 2013

Symposium Topics Are:

  • Initiate Therapy for High-Risk Smoldering Myeloma--Yes or No?
  • Early Transplantation in Multiple Myeloma--Yes or No?
  • Melphalan as Part of Induction Therapy for the Elderly Patient--Yes or No?
  • Maintenance Therapy--Yes or No?
  • Early Integration of New Therapies in the Salvage Setting--Yes or No?

Speakers:

Speaker 1: Brian G.M. Durie, MD 

Institution: Cedars-Sinai Outpatient Cancer Center, Los Angeles, California 

Speaker 2: Shaji Kumar, MD

Institution: Mayo Clinic, Rochester, MN 

Speaker 3: Jesús F. San-Miguel MD, PhD 

Institution: University of Salamanca, Salamanca, Spain 

Speaker 4: Philippe Moreau, MD 

Institution: University Hospital Hôtel-Dieu, Nantes, France 

Speaker 5: Antonio Palumbo, MD 

Institution: University of Turin, Turin, Italy 

Speaker 6: S. Vincent Rajkumar, MD 

Institution: Mayo Clinic College of Medicine, Rochester, Minnesota

Quite a lineup of myeloma experts!

You can view the speaker slides here:  

http://myeloma.org/ArticlePage.action?tabId=0&menuId=0&articleId=4216&aTab=-1&gParentType=nugget&gParentId=1&parentIndexPageId=1

The IMF had to bring in extra chairs for this session and we were at fire code maximum!  That means more hematologists/oncologists learning the latest about how to treat myeloma!  Excellent myeloma awareness and excellent for myeloma patients!  Here's a pix of the "at capacity" room:

Dr. Rajkumar said:  Myeloma is not one disease, one size does not fit all regarding treatment.  I love that we are treating the patient as a person and not the disease!  This is critical for long term survival! Thank you Dr. Rakjumar!

High Dose Treatment helps some patients, but we do not know who benefits the most.

As the programs at ASH continue over the next few days, please check out all the patients' blogs (written, video) and Tweets.  For details, please follow our social media team at:

http://myeloma.org/IndexPage.action?tabId=0&menuId=0&indexPageId=452&parentLinkId=7668&categoryId=0&gParentType=nugget&gParentId=1&parentIndexPageId=1

That's it for tonight, hope you enjoyed your dose of hope!


-- Robin Tuohy

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Friday was the day before the official start of ASH, otherwise known as Symposium Day where organizations like the International Myeloma Foundation (IMF) provide a panel of myeloma (MM) experts to discuss various topics and are typically attended by hundreds of clinicians.

But first, I have two other topics of discussion. I attended a meeting of the IMF's Global Myeloma Alliance, where representatives of advocacy organizations around the world attended in person or by phone. Participating countries included Canada, Israel, UK, Spain, Australia, South Korea, Malaysia and more. The goal of the GMA is to build upon the knowledge that exists within different countries on topics such as drug access and funding, and leverage that expertise in countries that need it.

Also, I just saw a joint press release from the IMF and Onyx (carfilzomib/Kyprolis) announcing a partnership in support of the IMF's Black Swan Research Initiative®. The goal of BSRI®  is to develop better testing (MRD -- minimum residual disease) that can more quickly determine new drug efficacy and possible cures (MRD-Zero). 

Next I attended the IMF Symposium, which was moderated by IMF Chairman Dr. Brian Durie and featured myeloma experts Doctors Shaji Kumar and Vincent Rajkumar (Mayo Clinic); Philippe Moreau (France), Jesus San-Miguel (Spain) and Antonio Palumbo (Italy). The format of this meeting attended by nearly 1,000 clinicians from around the world was to look at 5 case studies. For each study, a treatment question was asked, 2 experts presented Pro (Yes) and Con (No) sides, there was discussion, and the audience voted before and after each case study.

Overall, this symposium validated the importance of having a myeloma expert on your side. Beware though, if you have two or more, they may disagree. 

What follows are the questions and my takeaways in some detail:

 I) Treat High Risk Smoldering Myeloma (HR-SMM)?

First we need to agree on the definition of HR-SMM.  M-spike > 5 g/l AND plasma % > 33% is a possibility but there are others. Dr. San-Miguel (Pro) noted that every other cancer, e.g. breast, lung, benefit from early treatment so why not SMM, where the standard of care is "watch and wait"? And a recent Spanish study for HR-SMM (different definition) using Revlimd + dexamethasone showed an improvement of progression free survival (PFS) by about 2 years. Dr. Rajkumar (Con) said HR-SMM is not defined well.  We should look at ultra-HR-SMM (with del 17p or t(4:14)) and treat as MM.  And for standard risk SMM, watch and wait.  Then for the other group of HR-SMM, look at an on-going trial such as E3A06 that compares arms Revlimid-only (no dex) usage versus watch and wait. The audience voted about 37% pro vs 63% con.

II) Early Stem Cell Transplant (SCT) -Yes or No?

Dr. Moreau argued the Yes side, noting various studies. One showed three-year overall survival of 94% (w SCT) versus 78% (w/o SCT). Dr. Kumar argued No, countering that while an SCT can clearly help some patients, we don't know who they are. An SCT should not be mandatory but could be done at relapse. Both agreed that future results from the on-going IFM-DFCI trial comparing early versus late SCT will be valuable. The audience voted about 82% yes and 18% no.

III) Should Melphalan (Mel) be considered for induction treatment?  

Dr. San-Miguel (Yes) showed that in a study of Mel-Pred-Rev versus Mel-Pred, the results were nearly the same. So Mel had a bigger influence on treatment response than Rev. While Dr. Palumbo (No) noted that complete response (CR) rates correlate to long-term outcomes and showed there are better alternatives than Mel combinations (e.g. Vel-Mel-Pred) for generating CR's (e.g. Cfz-Rev-dex).  The audience voted about 44% yes and 56% no.

IV) Maintenance Therapy...Yes or No?

The audience vote going into this presentation was 71% yes versus 29% no.  Dr. Palumbo (Yes) showed trial results for either Rev or Vel maintenance provided a 1-year improvement before the myeloma reappears. Maintenance has also resulted in fewer deaths compared to non-maintenance arms in trials. As he stated, "Maintenance is really continued treatment." And drug-resistant relapse is much less of an issue than clonal MM cells causing relapse. Dr. Rajkumar (No) countered with the fact that "maintenance after an SCT removes the allure of a treatment-free benefit." He also noted that PFS is not the right endpoint and OS benefits are inconsistent.  He recommend that high-risk MM pts (del 17 or t(4:14)) benefit from Velcade maintenance; however standard-risk patients who achieve less than a VGPR (Very Good Partial Response) from the SCT should get Rev maintenance for 2 years, while those getting a VGPR or better should not get any maintenance. His arguments changed the minds of the audience, which then voted 45% yes and 55% no.

V) Should new therapies such as carfilzomib (Cfz) or pomolidomide (Pom) be used in the salvage setting - Yes or No?

Before the presentation, the audience voted 60% yes and 40% no. Dr. Kumar (Yes) showed that both Cfz and Pom have had good Overall Response Rates (ORR) in patients refractory to both Rev and Vel.  Dr Moreau (No) argued that since the case study had relapsed after 3 years on Rev maintenance after an SCT, that both non-Rev trials as well as a second SCT were viable treatment options. He convinced the audience which changed their vote to 41% yes and 59% no.

That's it. Great session, demonstrating the complexities of myeloma (there really are "multiple" myelomas) and treatment options.  


-- Jack Aiello

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New Orleans, LA December 7, 2013--I am sitting here at 6:00 a.m. trying to think of what to send. Ohio State lost last night and normally that would depress me, but other than being a bit disappointed I find my mind still racing from all of the information about multiple myeloma (MM).

On Friday I started my day meeting with 12 other Support Group Leaders (SGL) as we planned our entire conference activities. That took most of the morning. We had a nice lunch and then we went to the International Myeloma Foundation's symposium Critical Issues Need Answers: Providing Best Options for Myeloma Treatment in 2013.  In one room sat more than a thousand people, mostly doctors and nurses, all dedicated to fighting MM. In rapid-fire succession we listened to esteemed physicians proffer their position on a study. 

The subject matter ranged from the use of maintenance therapy after a stem cell transplant (STL), treating smoldering myeloma and MGUS patients, and treating the elderly myeloma patient. I am happy to say that at 65 years of age I am not considered among the "elderly," but many days make me feel that I am.

On Saturday I attended the International Myeloma Working Group (IMWG) breakfast. There were 80 of the most prominent myeloma doctors from around the world. This is the IMF's brain trust. Their research and work is tireless. For more than two hours we listened to studies on advances made in the treatment of myeloma. Reports from Germany, Greece, Italy, Spain, Switzerland, Japan and African were presented and debated. The doctors in this group are brilliant and proud of their work, and although they each think their position on all of the subjects discuss are the most correct, their cooperation and eagerness to share and advance their cause as a whole was evident. As a patient, I was very impressed.

This is getting long so I will pick it up with my next report. I need a cup of coffee and a shower. I hope all of you are doing well. Take care and know there are a lot of people working in your interest with the support of the IMF.

-- Nick Menedis
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I'm off to New Orleans, site of this year's American Society of Hematology (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 seven years ago and found it a bit like being diagnosed with myeloma nearly 19 years ago. The terminology and amount of information was overwhelming, understandably though since the intended audience is the 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 on biological lab studies because these are more immediate value to patients currently in treatment or soon to be diagnosed.

Officially, the ASH meeting runs from Saturday, Dec. 7 through Tuesday, Dec. 10.  Each day consists of:

Exhibit Hall: Analogous to a trade show in Silicon Valley (my home) where pharmaceutical companies (nearly 300), medical suppliers, research and 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 1,000 new 5x3-foot posters are hung displaying research projects from selected abstracts with details of background, method, patient demographics (could be Mouse Models), results for both responses and adverse side effects, and conclusions. 

Oral Presentations: Nearly 1,000 abstracts are designated for oral presentations, typically 10 minutes of slides and 5 minutes for Q&As. Unfortunately, there are simultaneous presentations, so no one can attend everything, even for just a single disease like MM...thus the reason for working out my agenda before arriving at ASH.

Today (Friday, Dec. 6), the day before the official start of ASH, is designated as Symposium Day, with Symposium sessions scheduled for 3 to 4 hours 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, which can be heard live here.

Friday morning I'll be attending a meeting of the IMF's Global Myeloma Alliance.  Our first meeting was this past summer and the goal of these 20+ advocates is to address several of the international MM issues, such as the unavailability of certain treatments due to government regulations. 

I'm with several other patients the IMF brought to ASH. We'll be blogging, posting on Facebook, and Twitter, and 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,

--Jack Aiello

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New Orleans, LA December 6, 2013--Excitement and encouragement are what I'm feeling as I wrap up my first day at ASH! I feel so privileged to be experiencing firsthand the buzz in the myeloma world among its scientific leaders. More than a thousand doctors packed the International Myeloma Foundation's  symposium Critical Issues Need Answers: Providing Best Options for Myeloma Treatment in 2013 to hear six world-renowned myeloma experts debate many of the top topics that will help myeloma patients' local oncologists offer the best care.   
 
There's never a good time to be diagnosed with multiple myeloma, but the treatment options and prognosis for many patients have never been better. In 2014 I will mark my fourth year as a myeloma patient and I know there are many great years ahead for me and so many myeloma patients.

Tomorrow is the official opening of the conference and I will be attending several educational sessions and exploring the exhibition hall filled with companies that support the treatment advancement of all blood cancers.

Be sure to keep a close eye on myeloma.org for the late breaking news on their efforts to lead the world's top scientists toward a cure!

-- Linda Huguelet