My key take-aways

| Robin Tuohy

The Post-ASH blog is always a challenge and one that takes the longest. I like to gather my notes, review my many tweets, and think about what struck me as most exciting to share with you and my local support group members. I encourage you to check out ALL the tweets from #ASH16. Two of the support group leaders received acknowledgement as “Top 10 Influencers of ASH!” Thanks to @IMFnurseMYELOMA (Teresa Miceli) and @MyelomaTeacher (Cindy Chmielewski).

My key take aways are:

  • Nelfinavir – This is an AIDS drug that works in myeloma! Abstract #487 from a Swiss team. There were 34 patients; resistant to Velcade in this trial. Nelfinavir is used in combo with Velcade/dex and is well tolerated; oral and overcomes Velcade resistance. This is in relapse refractory and had an overall response rate (ORR) of 65% (Partial response or better.) I’ll absolutely be watching this one and thank the investigators for thinking outside the box!
  • Venetoclax – Oral – BCL-2 Inhibitor. Abstracts #488 & 975. relapse/refractory disease and had an acceptable safety profile. Abstract #975 was a combo with Velcade/dex. Venetoclax alone is effective in refractory myeloma, especially in pts t(11;14): median 5 prior lines; and in combination with Velcade/dex.
  • Selinexor: Oral – Numerous combo trials – keep an eye on these:
  1. Abstract #491 – STORM trial (Selinexor with dex in relapse/refractory) For me, the most interesting part of this is that it had 48 quad (4 drug) refractory patients: patients refractory to Revlimid/Pomalyst/Velcade & Kyprolis! Plus 31 patients that were penta (5 drug) refractory (same as quad + dara) There was very impressive date for this “unmet need” population: The ORR was 21% (quad); and 20% (penta)
  2. Abstract #977 – STOMP trial (Selinexor with Velcade/Dex combo) 22 patients, proteasome inhibitor refractory; well tolerated.
  3. Abstract #330: Selinexor/Pom/dex
  4. Abstract #973: Selinexor/Kyprolis/dex
  • Lots on Smoldering and High Risk Smoldering (HRSMM) using Next Generation Flow
  1. Elotuzumab/Revlimid/dex combo: safe and active for HRSMM (Abstract #975)
  • Really cool presentation from Pamplona/Madrid teams regarding Next Generation Flow and genetic testing of circulating myeloma cells – which = liquid biopsy! A great thing for myeloma patients!
  • Darzalex:
  1. CASTOR/POLLUX: Both use Darzalex in combo with excellent updates and are very active
  2. Darzalex: effective for cardiac amyloid (Abstract #4525)
  3. Darzalex: can be given subcutaneous! (vs IV) (Abstract #1149)

Of note, it was also suggested to bring on DRD or DRV early on:


  • CAR-T: status and updates. Jury is still out for me as I will watch this as more enroll and more data is available. During the IMF’s conference series, Dr Joseph Mikhael from Mayo in Scottsdale, AZ stated this is as cutting edge as you can get, but caution.
  • Stem Cell Transplant for over 65! Nice to let patients know it’s no longer all about age, but how fit or frail you are which determines if you are eligible for transplant. However, acceptable but poorer outcomes in older patients. Need to assess comorbidity and frail beyond age.
  • Ninlaro: Lots of updates with excellent responses, here’s just one:
  1. Ninlaro/Rev/dex: very few adverse events: Thank you Dr Philippe Moreau/IFM


  • Pembrolizumab – is a checkpoint inhibitor – combos are also active. Side effects were manageable but high. More studies needed to better understand this pathway.
  • Kyprolis combos with Thalidomide; Revlimid; and Pomalidomide: all very active

I did not attend this late breaking session on Tuesday, however, Dr. Durie gives us an excellent blog on The StaMINA trial enrolled 758 patients and was a randomized study comparing single ASCT (autologous stem-cell transplant); single ASCT plus 4 cycles VRd (Velcade®, Revlimid®, dexamethasone) consolidation; and double ASCT; all with lenalidomide (Revlimid) maintenance

I highly encourage you to read more about this in Dr. Durie’s blog: don’t want to give a spoiler alert, but there was shock at using 38-month time showing no difference in PFS, OS or PD.

So bottom line: be encouraged and hopeful! While myeloma is not yet curable, our “toolbox” of treatment options is growing! Our list of oral treatment is expanding with the additions of Venetoclax and Selinexor, and that’s a good thing!

One of my favorite quotes at ASH came from Dr. Sagar Lonial, Emory: “There are subsets of myeloma patients we are curing.”

So with that, I’d like to thank the International Myeloma Foundation for being the originators of bringing myeloma patients to ASH and continuing to do so for over 10 years. I’d also like to thank the sponsors for supporting this unique program.

Last but not least, I’d like to give a huge shout out to the support group leaders that came to ASH with us this year. They worked long, hard days all to learn and bring the information back to you and their local myeloma communities. Please check out each of their blogs and their twitter feeds – there is lots of information to be thankful for and lots of hope!

I wish you Happy and Healthy Holidays!

P.S. Dr. Durie has just announced that he will do a Post-ASH teleconference on “What Myeloma Patients & Caregivers Need to Know from ASH 2016.” Please mark your calendars for January 12th!




Robin Tuohy

Robin Tuohy is caregiver to her husband Michael, who was diagnosed with multiple myeloma in 2000 at the age of 36. Robin is also the Senior Director of Support Groups for the International Myeloma Foundation. Robin will be leading a group of 15 myeloma patients and support group leaders through the various programs at ASH 2016. Each day will consist of listening to oral presentations, viewing posters in the vast Exhibition Hall, attending educational, myeloma specific programs, and much more. During ASH, Robin will be providing updates on all of the exciting activities the support group leaders participate in. Robin hopes the support group leaders’ blog posts, videos, tweets, and live coverage from all events will spread hope and excitement for our futures! Knowledge is Power! She hopes to bring back all the knowledge she gains at #ASH16 to her local support group, the Connecticut Multiple Myeloma Fighters Information Group.

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