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Day 4 ASH 12.11.12

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Today was the final morning at ASH with presentations from 7:30 am - 9 am. We heard about treatments with Bendamustine-Vel-dx (good results) as well as higher dose of Carfilzomib with longer infusion time (better response but it comes with higher toxicity). There was also an interesting study looking at infection rates for MM patients, who are 7 times more likely to get infections compare with non-MM folks and 12 times higher in the first year after diagnosis...so we need to be careful.

For patients diagnosed with kidney involvement (about 17% of us), novel therapies (Thal, Rev, Vel, Cfz, Pom...) has provided survival improvement. [BTW, many of these drugs are not so "novel" anymore. I was in a Thalidomide trial early '98.& Wonder why that name sticks around.]

After flying home, I'll be summarizing my results (typically a 6 pg write-up) and present them to our SF Bay Area MM support group.  I'm always happy to email it to others...just let me know if you want it.

Hope my blog has been informative, and I'm already looking forward to next year's ASH Dec 7-10 in New Orleans.

Stay well and informed.


Day 3 ASH 12.10.12

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So, as I mentioned previously, today is Myeloma Monday, meaning the first oral presentation began at 7am and the last one ended at 6pm.  Yes, we had some breaks but I used them to review the new posters and walk to different rooms in the large Convention Center. Each presentation is about 13 minutes with 2 minutes of q&a's...and the 15 minute time limit is monitored very closely.

Here's a sample presentation title: "A Phase 1/2 Study of Weekly MLN9708, in Investigational Oral Proteasome Inhibitor, in Combination with Lenalidomide and Dexamethasome in Patients with Previously Untreated Multiple Myeloma (MM)." The Powerpoint presentation topics typically cover Background, Trial Rationale, Treatment Plan, Patient Demographics, Trial Results (Responses, Survival Outcomes, Adverse Side Effects), Conclusion, and Future Directions.  I'm watching slides fly by at real time speed, all the while trying to record accurate information and listen to what's being said.  It's pretty intense as you listen to the terminology (for example, we know Lenalidomide as Revlimid) and try to interpret the results.

Today I heard good results for Newly Diagnosed patients with MM, including the regimen mentioned above (MLN9708-Rev-dx).  Others included:

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

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

  • Pomalidomide-Cytoxin-Prednisone (PCP)
  • Tabalumab (anti-BAFF Antibody) + Velcade
  • ARRY-520 (KSP Inhibitor) with or without dex
  • Pom-dx
  • Pom-Vel-dx
  • Lorvotuzumab Mertansine (LM, an antibody-drug conjugate) + Rev-dx

And I also listened to several presentations about transplants (SCT) and Maintenance:

  • Maintenance after SCT with Vel-Thal vs Thal vs Interferon
  • SCT outcomes '95-99, 2000-'04, and '05-10
  • Comparison of Induction (with poor response results) followed by 1) SCT or 2) "salvage" therapy (to improve response), followed by SCT. [Turns out it doesn't matter.]

So how's a patient to know as well as your oncologist decide what's best for you?  So many options lead to so many choices lead to so many questions.  This MM is really a very clever animal...once you think you've beaten it, MM figures out another pathway or another cell surface protein, or gets help from the surrounding environment to figure out a clonal variation or itself to avoid cell death. 

While typing this, I'm watching a wonderful IMF-sponsored debate among MM experts Drs. Durie, Polumbo, Rajkumar, and Richardson.  If they disagree on first-line treatment, 2, 3, or 4 drug regimens, and maintenance, how are we to know?  We all want the "best" treatment and get frustrated not having definitive answers.  Well, let me tell you what's worse...having only 2 treatment options Melphalan-Prednisone or VAD inductio + SCT and told the average life-span is only 2-3 years. That was my choice 18 years ago.  Personally, I'm much happier having more and much more effective/less toxic options.

ASH ends tomorrow morning so my final blog report will probably be written from the airport or after I return home.  I'm looking forward to both.

Stay educated,


Day 2 ASH 12.9.12

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

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

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

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

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

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

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

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

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


Day 1 ASH 12.8.12

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

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

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

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

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

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

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

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

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

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

Definitely a nice way to end the day.


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

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

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

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

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

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

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

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

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

2006-2010:   73%, 56% respectively

2001-2005:   63%, 31% respectively

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

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

Long day but very inspiring. 


Off to Atlanta

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

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

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

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

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

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

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

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

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

Ready for 4.5 days of information.


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