The Best of 2016

As 2016 comes to an end, we would like to take a moment to highlight a few of our most popular posts from each month and to thank the people who contributed to the popularity of these posts. We cannot thank the authors and organizations enough that have contributed to make 2016 one for the books, such as Marie Ennis-O’Connor, Melissa Van Houten, Treatment Diaries, David Wallace, Marcia Donziger, and Edward Leigh. Your efforts to Patient Empowerment Network are greatly appreciated.



Designing With The Patient In Mind

Marie Ennis-O’Conner  explains how the potential of digital technology will never be realized if unless the stakeholders work alongside patients in co-designing solutions that will truly engage, enable, and empower the end-user.

Edward Leigh’s Top 366 Tips

After a decade of work and personal experiences, Ed created the educational tool – Engaging Your Patients 2016 Calendar. In this calendar, there is a tip-a-day to connect, interview and educate patients in the hopes of improving patient satisfaction and safety.


5 Simple Steps to Become a Twitter Pro

Short how-to for beginners to learn how to use twitter to become educated and empowered patients

Complications Post Cancer Treatment

From Treatment Diaries, a “cancer free” patient shares the daily complications from the treatments that cured the cancer.


Shared Decision Making: Putting The Patient At The Center of Medical Care

Marie Ennis-O’Connor explores the importance of shared decision-making (SDM).

Tweetchats: What Are They? How Can I Participate?

A concise guide to help you understand and participate in Tweetchats.


The Power of Content Curation For Healthcare Communities

Marie Ennis-O’Connor explains the importance of more accessible, understandable, and credible healthcare information rather than just more untrustworthy content.

Chronic Lymphocytic Leukemia (CLL) 101 Storify

CLL 101 is an online course offered through created in partnership with the Patient Empowerment Network and To introduce our course, a #patientchat was held on March 18 at 1 PM EST and the included tweets are some highlights from the chat.


MRD Testing For Myeloma: What Is It?, Why Should It Be Used?, and Why?

Interview with C. Ola Landgren, MD, PhD, Chief, Myeloma Service Memorial Sloan Kettering Cancer Center.

Latest Research and Advancement in Multiple Myeloma

Interview with Thomas Martin, MD, Associate Director at the Myeloma Institute UCSF Medical Center.


Living Well With CLL

Interview with Patient Advocate, Jennifer Abraham.

What is Telehealth? How Can It Benefit Patients?

A concise explanation of telehealth plus top ways that it can benefit patients


The Conversation: Getting The Right Treatment and Testing For Lung Cancer

Panel Interview with lung cancer experts Emma Shtivelman, PhD, Chief Scientist Cancer Commons, Mary Ellen Hand, RN, BSN, Nurse Coordinator Rush University Medical Center, and Stage 4 Lung Cancer Patient, Mary Williams.

A Person Centered Approach To The Care of Chronic Illness

Marie Ennis-O’Connor describes the need for chronic illness patients to be treated as whole people rather than pieces of people.


Spotlight on: MPN Cancer Connection (MPN-CC)

Interview with David Wallace, founder of PV Reporter and MPN Cancer Connection.

How to Read Beyond the Headline: 9 Essential Questions to Evaluate Medical News

Marie Ennis-O’Connor shares her tips to separate fact from fiction when searching for reliable medical information.


Seven Steps to a Successful Digital Advocacy Strategy

Marie Ennis-O’Connor gives seven tips to engage your audience online and inspire them to take action around your cause by using digital tools and applications.

How Can Cancer Patients Contribute To Science?

From the Lung Cancer Town Meeting in Chicago, Illinois, Janet Freeman-Daily interviewed Dr. D. Ross Camidge about how lung cancer patients can contribute to cancer research.


The Benefits and Pitfalls of Blogging About Your Illness

Marie Ennis-O’Connor shares some of her concerns and experience about blogging about her illness.

Thanks to Social Media, Rare Progress on Rare Diseases

Recently, social media has been a big part of advances in how we identify and treat rare disease. Patients with these diseases are for the first time able to reach across geographic and cultural borders to band together, giving critical mass to efforts like fundraising and clinical trial enrollment that might otherwise wither away.

Chronic Illness: Oh, The Stress of It All 

Melissa Van Houten shares her story and discusses the stress that comes along with a chronic illness.


The Digital Sherpa Workshop Main Takeaways

Overview of our pilot Digital Sherpa Workshop.

What Records Should You Bring For A Second Opinion Appointment?

From the Lung Cancer Town Meeting in September 2016, the panel of lung cancer experts talk about what patients should bring to their second opinion.

5 Lessons Learned From An Ovarian Cancer Survivor founder and ovarian cancer survivor, Marcia Donziger shares 5 of the lessons learned after she was diagnosed with ovarian cancer at age 27.


Looking Back On 2016 With Andrew Schorr

Amy Gray interviews Andrew Schorr on his thoughts about the advances in cancer treatment in 2016.

15 Tips To Get the Most From Your Doctor’s Visit

In her latest blog, Marie Ennis-O’Connor, gives 15 tips to help you become a more empowered and engaged partner in your own health – and the health of those you care for.

15 Tips To Get the Most From Your Doctor’s Visit

beautyHave you ever had the experience of leaving the doctor’s office wishing you had remembered to ask a certain question? Or have you left it until the very end to tell your doctor about the real reason for your visit? These so-called “doorknob” questions – bringing up an important concern just as you are leaving the office – can mean your doctor won’t have time to adequately address your concerns. When the average time it takes for a doctor’s visit is fifteen minutes, it’s easy to feel rushed and forget what you wanted to say, or to leave an appointment unsure of the information you have heard. But with a little advance preparation you can learn how to make the most of those fifteen minutes. Follow these fifteen tips to become a more empowered and engaged partner in your own health – and the health of those you care for.

1. When you call to make your appointment, explain clearly why you need to see the doctor. Let the receptionist know how much time you will need to schedule for the visit. If you have any special needs, such as wheelchair access or interpretive needs, let the office know in advance.

2. Be sure to that where you make your appointment accepts your insurance. You can call or go online to your insurance website to see a directory of in-network providers.

3. If this is your first visit to a new physician, gather together any past medical records and family medical history to take along with you.  If you’re seeing other doctors and have information they’ve provided, bring this along too.

4. Write down a list of your symptoms before the visit. It’s a good idea to keep a diary so you can chart your symptoms over time. Include details of the type of symptoms you are experiencing, when these symptoms began, and what makes them better or worse.

Use this common medical mnemonic to guide you.


  • Pain (“Where does it hurt?”)
  • Quality (“What does it feel like?”)
  • Radiation (“Does it move anywhere?”)
  • Scale (“How bad is it? How much does it affect you?”)
  • Timing (“When did it start? How long does it last? Does it come and go? Is it gradual or sudden in onset? What makes it better or worse?”)
  • Other (“Any other symptoms?”)

5. Set the agenda at the start of your visit. Did you know that a patient has an average of 23 seconds to state their concerns before a physician interrupts? According to an article published in The Journal of the American Medical Association, only 28% of doctors know their patient’s full spectrum of concerns before they begin to focus on one particular concern, and once the conversation is focused, the likelihood of returning to other concerns is only 8%. Doctors have a limited amount of time for office visits. In order to use their time wisely they usually set the agenda and control the visit as much as possible. To avoid this happening to you, prepare in advance the top two or three concerns you want to raise with your doctor. Are you looking for a diagnosis? Do you need a new treatment plan or a modification of an existing plan? Are you looking for help with feelings of fatigue or depression? Don’t forget to describe your emotional state and any personal circumstances which may influence your physical health. Write down your main concerns so you are ready to verbalize them clearly at the beginning of  your visit.

6. If you use a self-tracking device, like a Fitbit, download your data and summarize the findings beforehand.

7. Bring a list of all medications you are currently taking, including over-the-counter medications, vitamins, herbs, or supplements. If you have a smart phone or tablet, it’s useful to take pictures of your medication and supplement labels to show the doctor.

8. During your visit, tell your doctor you would like to take notes. If you would prefer to record your notes via your smartphone, ask your doctor if it is ok to do so.

9. Medical care is a conversation. So to have influence in that conversation you have to speak up. If you don’t want the treatment your doctor recommends (or you’re not sure), it’s reasonable to ask if there are other treatment options available. Never be embarrassed to tell your doctor if you don’t understand something she has said. Sometimes doctors use medical jargon without realizing they are not explaining things in terms we understand. Repeat what the doctor has told you to be sure you understand and ask for clarification if needed

10. If you find it difficult to speak up for yourself, or you are facing a potentially challenging diagnosis, bring a friend or family member along for support. This person can also take notes and help you remember what was discussed later.

11. Always be honest with your doctor. You may not like to admit how much you drink, or smoke, or if you have stopped taking your medication because of expense or side effects, but your doctor needs to know about these and other lifestyle matters to ensure you are receiving optimum care.

12. Ask you doctor to explain any test results to you, Request a copy of the results for your own files.

13. Before you leave, be sure you understand what needs to happen next. Do you need any further diagnostic tests? When will you get the results? If you have just received a diagnosis, what are your treatment options? If you have questions or concerns later how should you contact your doctor? You can also ask if your doctor recommends any specific reading materials or websites about your condition.

14. If you have been given a prescription for a new medication, do you understand how and when the medication should be taken? Are there any side-effects, for example drowsiness, you should watch for? How will you know if the medication is working? What happens if you miss a dose?

15. After your visit, review and file your notes along with any test results or other documentation and billing you received. Schedule any follow up tests or appointments right away.

Your relationship with your doctor is one of the most important you have. Advance preparation will help you use your own time and your doctor’s time more efficiently and effectively. When people take an active role in their care, research shows they are more satisfied and do better in how well treatments work. Preparing for your doctor’s visit is an important step toward becoming a partner in your own health care and a better advocate for your health and well-being.

Understanding Itching and Night Sweats With MPN

From the Understanding Myeloproliferative Neoplasms (MPNs) Town Meeting, a panel of experts explains why MPN patients have to deal with itching and night sweats and what they can do to treat those side effects. The panel includes:

  • Olatoyosi Odenike, MD, Associate Professor of Medicine at The University of Chicago Medical Center
  • Julie Huynh-Lu, PA-C, Physician Assistant, Department of Leukemia at The University of Texas MD Anderson Cancer Center
  • Srdan Verstovsek, MD, PhD, Professor, Department of Leukemia, Division of Cancer Medicine at The University of Texas MD Anderson Cancer Center
  • Carmelita Escalante, MD, FACP, Professor and Chair, Department of General Internal Medicine at The University of Texas MD Anderson Cancer Center

Please check out the full video below to hear from the experts.

Understanding Itching and Night Sweats With MPN from Patient Empowerment Network on Vimeo.

Myeloma Highlights – #ASH16


According to Jack Aiello (definitely not medically trained)


ASH 2016 Conference

ASH 2016 Conference

This is my 11th year attending ASH (American Society of Hematology) Conference, where 25,000 attendees from all over the world (hematologists/oncologists, lab researchers, oncology nurses, scientists & 300 pharma companies) present the latest research results via both oral presentations (1000) as well as posters (3000) on all blood cancers. This year there were nearly 700 abstracts (>100 clinical) on Myeloma alone, many of which were selected for oral presentation. I’m grateful to the IMF ( and their pharma donors for sending me to ASH so that I can learn and share my patient perspective with you.

Rather than attending talks on Biology, I typically focus on the Clinical Trials, which I’m able to understand and are more relevant near-term to patients. Even at that, there are overlapping MM oral sessions as well as 4’x6’ posters without reprints, so it’s always possible that I have not included something of interest to you or made a typo because I can’t read my own writing as detailed powerpoint slides are presented quickly. You might want to view the published abstracts at and various press releases. [Wherever possible, I’ve listed Day-Abstract#-Lead Investigator after the trial results, e.g. {Mon-675-T. Zimmerman} and clicking on the abstract number will take you to the actual abstract.]

There are other ways to learn more about results from this conference. There are scheduled webinars (MMRF 1/11/17, IMF 1/12/17) which you can listen to live or by replay. You’ll also find some patient blogs (including mine) as well as MM expert video interviews posted on the IMF website (, Patient Power (, and Myeloma Crowd ( among others. And all of us in the SF Bay Area should attend the LLS Blood Cancer Conference (which includes updates from ASH) Feb 4, 2017 (Register Now). Dr. Jeff Wolf of UCSF will do a great job presenting the latest information.

Presentations and posters of clinical trial results follow the same format: Background (including hypothesis), Study Objective, Design & Treatment schema, Patient Characteristics & Cohorts, Responses (include high-risk cytogenetics), Toxicity (hematological and non-hematological), Conclusion, and Next Step. Remember, the goal of Phase I (typically handful of patients) is to determine “Maximum Tolerated Dose”; Phase I/II and II (typically 25-75 pts) continues to measure dosage escalation and safety while looking at responses; and finally Phase III (several hundred patients) compares response rates between new and current treatments.

Treatment schedules are defined for stages of Induction, and optionally Transplant, Consolidation, and Maintenance with specified Randomization along the way; dosage amounts and scheduling are provided for each drug along with optimum number of treatment cycles (typically 28 days). Risk stratification correlates various techniques such cytogentics-FISH analysis (e.g. chromosome deletions and translocations) and gene-expression profiling (GEP).

HIGHLIGHTS (e.g. My Takeaways)

1. In Nov 2015, 3 new drugs were approved for Myeloma…Daratumumab, Elotumumab (both mAb’s) and Ixazomib (oral PI). At this ASH, trials were presented that provided results for using these drugs beyond their current FDA-approved indications such as Dara in combinations and Ixa before and after transplant.

2. Speaking of transplants (SCT), there were lots of abstracts on specific SCT usage…some contradictory. For example, one trial showed SCT plus consolidation benefitting MM pts while another trial showed no difference whether being treated with a single SCT, SCT + consolidation, or a tandem SCT.

3. There were 3 new drugs of interest: Nelfinivar, Selinexar and Venetoclax. Most impressive is that they were particularly effective in certain scenarios: Nelfinivar (with Velcade) for Vel-refractory pts; Selinexar alone for t(11;14) pts; and Ventoclax + dex for quad- and penta-refractory pts. Quad means refractory to Rev, Vel, Pom and Cfz, while Penta include Dara.

4. Minimum Residual Disease (MRD) testing is still not ready for prime time, but one doctor googled “Myeloma + MRD” and found 45 abstracts. MRD tests are certainly being added and reported in trials and while there’s good correlation between PFS/OS and MRD, it’s still not being used to determine subsequent treatment. Since MRD has the potential to guide therapy, stop therapy and change therapy, it’s something we patients need to keep on our radar.

5. There were several presentations on Immunotherapies (mAb’s, CAR-T’s and checkpoint inhibitors). However other than mAb’s like Dara, Elo, and Isatuximab (not yet approved), CAR-T and checkpoint inhibitors are still in a very early stage of evaluation.

6. More on checkpoint inhibitors. Dr Don Benson (OSU) explained that MM suppresses the immune system from doing its job. Inhibitors of the KIR ligand and PD1/PDL1 pathways enable NK cells and T-cells respectively to do a better job of finding and destroying MM cells. The concern, however, is that normal cells also have these built in checkpoints and you wouldn’t want the immune system destroying these cells as well. One doctor even mentioned that these are still “scary”.


7. “For patients in a CR, half will be MRD- and half will be MRD+.” B. Durie (IMF)

8. “I always see SMM patients again 1 month after diagnosis. It’s more important to know the tempo of their disease than risk factors.” S. Lonial (Emory)

9. “I’m afraid that some might interpret MRD- as a cure, which is not true.” J. Mikhael (Mayo)

10. “Half of SMM patients have MGUS-like disease and half are more like MM. If we only knew which patients were which, we would know who to treat.” S. V. Rajkumar (Mayo)

11. “It’s becoming more difficult to select the best treatment option for R/R MM patients.” P. Moreau (France)

12. When discussing the management of ND HRMM pts, Dr A. Dispenzieri (Mayo) reminded attendees that “high risk” not only includes chromosome abnormalities but also fitness/frailty assessment and access/cost of treatment. Whether TE or nTE, these patients should consider Velcade-based induction and maintenance. TE pts should consider Tandem SCT. And for renal-impaired, Velcade triplet is more effective than a Velcade-doublet.

13. “Although CR and MRD- should be the goal, not all patients get there and this needs to be considered.” N. Raje (UMass)

14. “For relapsed patients, doctors must consider previous treatments and responses. R/R MM pts should consider including POM.” N. Raje (UMass)

15. “Every 5 years, folks ask if SCT is dead. But it isn’t…not yet”. P. McCarthy (Roswell-NY)

16. “Today we are curing a subset of patients. We just don’t know who they are.” S. Lonial (Emory)


17. n=270 in 2 trials demonstrated that multiparameter flow cytometry may represent a better way (actually a “biomarker”) to classify HR SMM. Specifically this test classified these patients as MGUS-like (17%), Intermediate between MGUS & MM (66%) and MM-like (18%). Then 2-yr median Time-to-Progression (TTP) to MM/risk % was shown to be “not reached”/4%, 57 mos/25%, and 16 mos/58% respectively. {Sun-373-B. Paiva}

18. n=34 Elo (weekly)-Rev-dex in High Risk SMM, where HR is based on cytogenetics t(4:14), t(14:16, 17p- or +1q amplification. ORR was 82% (including CR 9%) and thus far no pts have progressed to active MM during or after protocol therapy. {Mon-976-I. Ghobrial}


19. Ph 3, n=1600 NDMM pts, final PFS & OS results of the FIRST trial were presented comparing Rd continuous vs Rd 18 mos vs MPT. 4-yr PFS % (33 vs 14 vs 14) and median OS mos (59 vs 62 vs 49) and other factors showed overall benefit for continuous Rd. {Sat-241-T. Facon }


20. Ph 3, n=1400 NDMM pts, EMN02/HO95 MM trial VCD (R1) VMP or SCT (R2) VRD consolidation or none followed by Rev maintenance till progression, examined the impact of consolidation, which benefitted std but not HR pts. Best news was that 3yr OS from R2 was 86% and 87% respectively.{Sat-242-P. Sonneveld}

21. Additional analysis was provided from the EMN02/HO95 MM trial shown above. Specifically, the SCT arm did show benefit over the VMP arm for all pts, e.g. ORR 86% vs 75% and 3yr PFS 65% vs 57%; for HR pts 3yr PFS was 52% vs 30%. So ultimately HR MM pts benefitted by SCT but not from consolidation (above). {Mon-673-M. Cavo}

22. Ph 3, n=581 Myeloma XI study investigated a response-adapted approach to induction. Specifically if pts achieved less than VGPR to induction (IMID regimen), they would be randomized to be given an additional regimen (PI based) before SCT. The consolidation side improved median PFS from 20 to 30 mos. For those having a transplant, the PFS was even better (31 mos versus 55 mos). However even Transplant Ineligible pts showed PFS benefit with consolidation of 14 vs 20 mos. {Sat-244-G. Jackson}

23. n=42, Ph 2. IxaRd –> SCT -> IxaRd -> Ixa maintenance for NDMM pts. Note this all-oral therapy (except for SCT). VGPR (CR) or better at the end of Induction, SCT and Consolidation were 36% (12%), 78% (38%), and 77% (44%) respectively. Adverse events were well-tolerated with no grade 3/4 neuropathy. If the future Dara may be added to this regimen. {Mon-674-P. Moreau}

24. n=76, Ph 2. KRdx4 -> SCT -> KRdx4 -> KRd maintenance (x10) -> Rev maintenance. Analysis were done after cycles 4, 8, and 18. At C18, ORR was 94% with a very high 86% in CR. [BTW, with no SCT for another group of 53 pts, C18 ORR/CR was 90%/40%.] MRD was done by both Flow and NGS. At C8 and C18 MRD- was 86%/64% and 97%/71% respectively by each method. For HRMM pts, ORR was 96% (81% CR) and C18 MRD- was 90%/63%. And 3yr PFS/OS was 86%/95%. When asked to compare this KRd regimen with the IxaRd regimen results above, the speaker said KRd speeds up response but has higher toxicity. {Mon-675-T. Zimmerman}

25. n = 46, KRdx4 -> SCT -> KRdx4 -> Rev maintenance (nearly the same as above) resulted in similar outcomes sCR = 57%, >= VGPR = 91%, MRD- = 70% with no neuropathy. {Mon-1142-G. Jackson}

26. n=111, Ph 2. KTdx4 -> SCT –> KTd x4 (T lowered from 200mg to 50mg). ORR after consolidation was 95% (CR=64%). Overall 3yr PFS and OS were 68% and 90% respectively. For HR pts, responses and OS were about the same while PFS was less. {Mon-1141-R. Wester}

27. n=750 pts were randomized into 3 arms. Arm 1, denote ACM, received one auto SCT, 4 cycles of RVD consolidation, then Rev maintenance until progression. Arm 2, denoted TAM, received a tandem (two) SCT’s and Rev maintenance until progression. Finally Arm 3, denoted AM, received a single auto SCT, then Rev maintenance until progression. After 38 months, the PFS (57%/56%/52%) and OS (86%/82%/63%) were comparable in all three groups. Furthermore, when looking at subgroups such as High Risk, there was no differences (all about 24% PFS and 75% OS). Even overall secondary primary cancers (SPMs) were all about 5%. {Tue-LBA-1-E. Stadtmauer}


28. MRD results were presented for the recent POLLUX (DaraRd vs Rd) and CASTOR (DaraVd vs Vd) trials, which resulted in FDA approval of using Dara with Rev or Vel. MRD- outcomes were typically about 3x in the Dara arms versus the non-Dara arms. Further, MRD- for Dara-Rd was about 2x compared with the Dara-Vd arm (25% vs 10% evaluated by NGS with 10-5 sensitivity). {Sat-246-H. Avet-loiseau}

29. Another update of the Pollux study (DRd vs Rd) for RRMM pts showed benefits in ORR (94% vs 77%), 18 mos PFS (77% vs 50%), and MRD- (25% vs 6%). ORR for HRMM was 89% vs 67%. {Sun-489-P. Moreau}

30. n=41 RRMM pts on Dara-Pom-dex trial also examined “retreatment” with Dara. ORR 89% for Dara & Pom naïve but nearly 35% ORR for pts refractory to both Dara and Pom {Sun-492-A. Nooka}


31. Ph 3, n-432. Tourmaline-MM1 study Ixa-Rd vx Rd for RR MM pts that resulted in Ixazomib approval Nov 2015. This sub-analysis examined patient expression level of c-MYC (proto-oncogene regulation cell proliferation & cell death. High c-MYC expression pts showed a 6 month PFS benefit on the Ixa-Rd over Rd. {Sat- 243-A. Di Bacco}


32. n=34 Nelfinavir is an approved, generic oral drug, and HIV protease inhibitor used to treat AIDS. When combined with Vel-dex (NVd) for Vel-refractory ASH16pts (and 76% were also Rev-refractory), ORR = 65% include 5 pts achieving VGPR. {Sun-487-C. Driessen}

33. n=66 (inc 30 pts had t(11;14) MM. Ph 1. Venetoclax, BCL-2 inhibitor, single agent for RRMM showed 21% ORR but 40% ORR for t(11;14) pts (88% if also high BCL-2 expression). {Sun-488-S. Kumar}

34. n=65 Venetoclax + Vel-d for RRMM pts. Overall ORR 67% with best responses ORR=97% for Vel non-refractor and 1-3 prior tx lines. Worst ORR for >6 tx lines (20%) or Velcade-refractory (31%). Likely Ph 3 to be Ven-Vd vs Vd. Higher BCL-2 expression means better ORR. {Mon-975-P. Moreau}

35. n=45, Ph 2 Pembrolizumab (checkpoint inhibitor Keytruda) + Pom-dex for RRMM, all refractory to Rev, 73% double refractory. ORR 65% (inc 27% >= VGPR and median PFS 17 mos. However ASE’s included 40% grade 3 neutropenic and . pts required dose reduction. {Sun-490-A. Badros}

36. n=79 including 48 quad (Rev-Vel-Pom-Cfz) and 31 penta (quad + Dara) refractory. Selinexor (80 mg 2x/wk) (oral XPO1 inhibitor) and dex (20 mg 2x/wk) regimen (Sd) goes by the name STORM study. ORR was about 20% for both quad and penta but also had grade 3/4 hematological events. Median OS was 9.3 mos. {Sun-491-D. Vogl}

37. n=12, Phase 1 study of Selinexor-Cfz-d in RRMM pts. These 12 pts were also refractory to Cfz. ORR for this group was 67% (15% >= VGPR) with 3.7 mos PFS. {Mon-973-A. Jakubowiak}

38. n=22, Ph 1b/2 study of Selinexor (100 mg/wk)-Vel-d (SdB) for RR MM pts, including those refractory to Vel (STOMP trial). Overall ORR=77% (inc 9% CR, 18% VGPR). For Vel-refractory, ORR=67%, while Vel-exposed/naïve had 100% ORR. {Mon-977-N. Bahlis}

39. n=12, Pilot Study of CAR-T CD19 in conjunction with salvage (2nd) SCT for advanced MM. Method: 2 weeks after the SCT, 5 x 107 CAR-T cells are infused. Of these 12 pts, 3 pts had a VGPR and longer PFS than from their first SCT. One patient (featured on the cover of Parade Magazine several months ago) had a 16 mos PFS but then relapsed and is now in a 12-mos CR with Dara. Only one episode of cytokine release for these 12 pts. {Mon-974-A. Garfall}


40. n=113 For Light Chain MM patients who follow their disease with 24-hr urine analysis (UPEP), the Serum Free Light Chain test offered better correlation with clinical outcomes (e.g. PFS) than urine assessments….and is certainly easier on these patients. {Sun-376-T. Dejoie}

41. There were several presentations on racial disparities. These included {Mon-844-M. Fiala}and {Mon-846-A. Rosenberg}that examined the usage of SCT’s by African American MM pts. The first concluded that when elimininating health disparities and postential access barriers, black pts are will 37% less likely to utilize an SCT. The second focus was on California patients but came up with a similar number 30%. This poster {Sun-3544-S. Ailawadhi}examinedMM complications (CRAB symptoms) among different racial groups with blacks having the highest rate of complications, perhaps being due to reduced access to drugs/supplemental insurance coverage.

42. An interesting study for Myeloma Cast Nephropathy (kidney impairment) comparing Haemodialysis with High Cut-off vs Standard High Flux Dialyzer in pts receiving Velcade-based therapies. With Haemodialysis, 1/2 the pts became dialysis-free versus only 1/3 in the Standard control group. {Mon-978-JP Fermand}

43. n=41 This trial study the efficacy and side effects from administration of Daratumumab via sub-Q injection in R/R MM pts. For pts on the recommended dose of 1800mg given over 30 minutes, the ORR was 41% and Infusion Reaction Rates were lower than with Dara IV infusion. And when asked about pain or bruising at the infusion site, Dr Usmani said that neither were problems. This has the potential to reduce infusion times from six or eight hours to 30 minutes. {Mon-1149-S. Usmani}


For someone diagnosed with stage III MM 22 years ago with only 2 treatment options available (MP or VAD-SCT) and given 2-3 years expected survival, I’ve seen incredible progress since 2003 when Velcade was first approved. While there continues to be unanswered questions, we now have many more effective treatments for MM, providing patients with better opportunities to manage their disease.

GLOSSARY (according to Jack) Drug (brand names) by Drug Class/Category

IMID – Immunomodulary Drug

T – Thalidomide

R – (Lenalidomide) Revlimid

Pom – Pomalidomide (Pomalyst)

PI – Proteasome Inhibitor

V- Velcade (Bortezomib)

Cfz – Carfilzomib (Kyprolis)

I, Ixa – Ixazomib (Ninlaro)

mAb – Monocloncal Antibody

D, Dara – Daratumumab (Darzalex)

E, Elo – Elotuzumab (Empliciti)

Isa – Isatuximab (SAR650984)

HDAC – histone deacetylase inhibitors

Pano – Panobinostat (Farydak)


P – Prednisone

D or d – Dexamethasone

Chemotherapy Drugs

C – Cyclophosphamide (Cytoxan)

M – Melphalan

Treatment Measurements

EFS – Event-free Survival

ORR – Overall response (>=PR)

OS – Overall Survival

PD – Progressive Disease

PFS – Progression-free Survival

PFS2 – PFS + next-line treatment PFS

TTP – Time to Progression

TTR – Time to Respond

Treatment Response

CR – Complete Response: No sign of MM (0 M-spike)

nCR – Near CR (positive M-spike, may be same as VGPR)

MR – Marginal Response: 0-50% reduction in MM

PR- Partial Response: 50% reduction in MM

SD – Stable Disease i.e. no response but also not worse

sCR-Stringent CR: CR+ normal FLC & no clonal cells

VGPR – 90% reduction in MM

MRD – Minimum Residual Disease typically by Flow Cytometry (NGF) or DNA sequencing (NGS) to provide more accurate measure of MM.

Side Effects

AE (ASE) – Adverse Event (Adverse Side Effects)

DVT – Deep Vein Thrombosis (blood clots)

MTD – Maximum Tolerated Dose

ONJ – Osteonecrosis of the Jaw

PE – Pulmonary Embolism

PN – Peripheral Neuropathy

QOL – Quality Of Life

VTE – Venous Thromboembolism (PE + DVT)

Tests/When to treat?

CRAB – High Calcium, Renal, Anemia, and Bone…

CRABi – CRAB + “i” increased infections

FLC – Free Light Chain

SCT – Auto stem cell transplant.

TE, NTE – Transplant Eligible of Not TE

“d” and “D” – Typically both mean Low-dose Dex (40 mg/week) these days

MGUS – Monoclonal Gammopathy of Undetermined Significance

SMM – Smoldering MM

Pt(s) – Patient(s)

n – Number of pts

R/R- Relapsed/Refractory, Ref defined progressing while on Tx or within 60 days.

HR – High Risk

Day 8: Non Hodgkin Lymphoma

Editor’s NoteThis blog was originally written and posted for HealthUnlocked here.

This Christmas, we have partnered up with HealthUnlocked to participate in their 12 Days of Christmas campaign. This campaign features twelve different health and wellbeing conditions and their online communities.

Day 8: Non Hodgkin LymphomaHU day 8

Non-Hodgkin Lymphoma (also known as Non-Hodgkin’s Lymphoma, NHL, or sometimes just Lymphoma) is a cancer that starts in cells called lymphocytes (a type of white blood cell), which are part of the lymphatic system. This system – composed of lymph nodes in your neck, armpits, groin, chest, and abdomen – removes excess fluids from your body and produces immune cells. Abnormal lymphocytes become lymphoma cells, which multiply and collect in your lymph nodes. Over time, these cancerous cells impair your immune system.

NHL is one of the most common cancers in the United States, accounting for about 4% of all cancers. The average American’s risk of developing NHL during his or her lifetime is about 1 in 50 – that’s about 72,580 this year alone.

Key Facts on NHL

  • Lymphomas are divided into two categories: Hodgkin Lymphoma and Non-Hodgkin Lymphomas. About 88% if people with lymphoma have Non-Hodgkin Lymphoma
  • There are two main types: B-Cell Lymphoma or T-Cell Lymphoma – but there are about 60 subtypes
  • Overall survival at five years is more than 60%, according to the National Cancer Institute
  • NHL most often starts in the lymph nodes in the upper part of the body – in the neck or chest or under the arms
  • It can spread through the lymph system to other lymph nodes and outside the lymph nodes to the bone marrow, lungs, or liver
  • There is no known cause of NHL, but there are several factors that may increase risk, such as a weakened immune system from an inherited disease, autoimmune disease, HIV, or drugs given because of an organ transplant, and certain viruses or chemicals
  • NHL occurs more often in patients between the ages of 40 and 70

 Symptoms of NHL

  • Swollen lymph nodes and/or abdomen
  • Chest pain or pressure
  • Shortness of breath or cough
  • Fever or night sweats
  • Weight loss or fatigue
  • Low red blood cell counts


Join an online Non-Hodgkin’s Lymphoma community within HealthUnlocked today. Get support, help, and information from people who also have the condition.

Stupid Cancer

Stupid Cancer, a 501(c)3 non-profit organization, is the dominant healthcare brand for millions affected by young adult cancer.

Our innovative and award-winning services serve as a bullhorn to propel the young adult cancer movement forward and our charter is to ensure that no one affected by young adult cancer go unaware of the age-appropriate support resources they are entitled to so they can get busy living.

Seven times more common than all pediatric cancers combined, young adult cancer (age 15-39) is largely unknown in the war on cancer with 72,000 new diagnoses each year. That’s one every eight minutes. This is not OK! This neglected group—now millions strong—has limited resources, inadequate support, and, more importantly, a lack of awareness and understanding from the community around them.

PV Reporter

PV Reporter was created to fill a gap in the MPN patient community providing “easy access” to pertinent information on Polycythemia Vera (PV),  Essential Thrombocythemia (ET) and Myelofibrosis (MF).  These disorders are Myeloproliferative Neoplasms (MPNs), a closely related group of blood cancers where the bone marrow cells that produce the body’s blood cells function and develop abnormally.  If you are a newly diagnosed patient or researching MPNs, make PV Reporter your starting point.  While many existing MPN websites provide excellent content, they tend to be internally focused or lack internal or external search capabilities.  PV Reporter solves that problem with MPN Search – retrieving exactly the information you are looking for!

MPN Research Foundation

The MPN Research Foundation has a single goal: to stimulate original research in pursuit of new treatments — and eventually a cure — for polycythemia vera, essential thrombocythemia and myelofibrosis, known collectively as myeloproliferative neoplasms (MPN).

MD Anderson Cancer Center

The mission of The University of Texas MD Anderson Cancer Center is to eliminate cancer in Texas, the nation, and the world through outstanding programs that integrate patient care, research and prevention, and through education for undergraduate and graduate students, trainees, professionals, employees and the public.

We shall be the premier cancer center in the world, based on the excellence of our people, our research-driven patient care and our science. We are Making Cancer History.


Patient Power is dedicated to providing you with the resources and information you need to have the confidence, knowledge and hope to help you–or your loved one–live well with cancer.

Connect with an active community of medical experts and patient advocates in our health centers. You’ll learn about a wide range of topics: From cutting-edge research and treatment news to coping with cancer in your everyday life. Through our video interviews, in-person town meetings and online features, you’ll receive the tools and resources you need to better manage your cancer and live with hope.

Hear from patients like you, as they share their stories, insights and inspirational tips. And through our patient interviews and featured blogs, you’ll learn how to become your own advocate to help ensure you live–and feel–the best that you can.

Be on the forefront of developing research and treatment news as it emerges. We interview the top researchers in their field, on location at medical conferences, and help you to understand what ongoing studies and research could mean for you or your loved one.

Crowd Care

The CrowdCare Foundation is a 501(c)3 non-profit organization founded by myeloma patients who are dedicated to driving cures for multiple myeloma through collaboration between patient, their families, doctors and researchers. We know how overwhelming a diagnosis can be both physically and emotionally and support patients at each step of their multiple myeloma journey – from diagnosis, through care and on to a cure.

Myeloma Crowd

The Myeloma Crowd website is the first all-inclusive site for myeloma patients and features all of the good being done in the world of myeloma from foundations, patient support groups, individuals and myeloma specialists. On the site patients can learn about the latest in research and clinical trials, link to the best myeloma news sources, find a myeloma specialist, learn about myeloma events, find a support group, and much more.

Seattle Cancer Care Alliance

Seattle Cancer Care Alliance (SCCA) is a cancer treatment center that unites doctors from Fred Hutchinson Cancer Research Center, UW Medicine, and Seattle Children’s. Our goal, every day, is to turn cancer patients into cancer survivors. Our purpose is to lead the world in the prevention and treatment of cancer.

SCCA patients may be seen at the SCCA outpatient clinic on Lake Union, UW Medical Center, EvergreenHealth, and Northwest Hospital. Pediatric patients may be seen at the SCCA outpatient clinic and Seattle Children’s. If overnight hospital stays are necessary, adult patients go to UWMC and pediatric patients go to Seattle Children’s.

Visit Website:

Least Invasive First

Dr. Winn Sams

Dr. Winn Sams

Editor’s Note: This blog was written by Winn Sams, D.C. Dr. Sams practices in Columbus, NC a small town snuggled in the foothills of the western part of the state.  A native of Charlotte, NC with a B.A. in Economics from the University of North Carolina- Chapel Hill, Dr. Sams graduated from Sherman College of Chiropractic in 2002 summa cum laude and valedictorian of her class. From her own experience where personal health directives and choices were not heard nor respected, she decided to create a site where uniqueness and diversity could be anchored in healthcare. Being a healthcare provider, she knew how important it is for the “whole” person to be not only known, but included in a plan of care. Thus, Least Invasive First was born.

Recently, my youngest daughter broke her right arm and dislocated her elbow. The ER referred her out to an orthopedist nearby. We showed up at the appointment with a lot of questions and wanting to know what our options were. The doctor entered the room, did not make eye contact with me nor my daughter’s friend, who was sitting next to me. His handshake was a mere extension of his hand to us (friend and myself), kind of like a king might do to his subjects to kiss his ring. He said he would like to order a CT scan of my daughter’s elbow and do surgery. I asked were there any other options and he said “No” and that he would be back in a few minutes. He never came back, but his nurse showed up to schedule the surgery. I was furious and let her know my dissatisfaction, clearly acknowledging that it wasn’t her fault, but we would not be coming back.

Now, you have to understand I am a Doctor of Chiropractic. I see patients every day and I would never treat anyone the way we were treated. There was no informed consent , no shared decision making in developing a treatment and no respect for who my daughter was (or us for that matter) as a unique person seeking care. EVERYONE deserves all of the above! So, we left that office and made an appointment with another Orthopedist, who was absolutely fabulous. Our experience was night and day from the first one. We felt like we were a part of creating our plan of care, throughout the whole appointment and were at peace with the planned surgery, leaving there feeling like we were in good hands.

My concern is this. When we are in pain or an emergency situation, we usually are not thinking straight. We just want someone to help us get out of pain and/or tell us what is wrong. We may accept the first Doctor that we encounter, as he/she knows more than us. As far as what a Doctor is taught in school, the knowledge of how the body works and their expertise/experience, that is true. HOWEVER,  the patient still has to be included in the whole process, otherwise, you are giving your power over to someone to do as they deem fit TO you. That is a recipe for disaster.

Data and evidence based science measure outcomes that can be repeated. That is a big help when trying to choose a plan of action, but healing and how our bodies RESPOND to said procedures or medications is not an exact science. This is where our uniqueness comes in. Some people are allergic to medications or do not need to start out with the highest dose, as their bodies may actually react unfavorably to what may be the standard practice. Some people would like to try other options first, if possible. In the best interest of all, seeing how that choice works and then moving on to more invasive choices if necessary. It is imperative that your Doctor know as much about ALL of you to make the best plan of care. But, you don’t have to back down or be ashamed of your choices if they don’t match up with your provider’s. Remember, a Doctor is only a person ( yes, just a person like you and I) who has certain training and experience in particular fields. You cannot assume that your Doctor has your best care in mind, when they don’t have a clear picture of who you are on all fronts.

So, with all of this in mind, I developed a site called Least Invasive First,, where you can keep all of your advance health directives and info in one place, with everything digitally accessible at any time. You can upload forms and/or pictures into your profile that provide information, that in especially stressful times, you have available at the click of a button. Medications can be listed with dosage, so you can edit them as they change. You can also give your username and password information to a family member, so they have access to your information if you are unresponsive or not able to make decisions for yourself. There are a lot of creative ways that this service can be used.

Fortunately, this concept works well for the Doctor and/or hospital side too. I have interviewed many of both and all have voiced a resounding affirmation that information the patient provides would be a tremendous help. I am glad to offer a way to potentially change healthcare and it starts with you!




How Do You Find Out About Clinical Trials?

Interview with Larry Anderson, Jr., MD, PhD, Assistant Professor, Department of Internal Medicine, Division of Hematology/Oncology University of Texas Southwestern Medical Center, Patient Advocate, Lynette, and Robert Orlowski, MD, PhD, Director of Myeloma and Professor in the Departments of Lymphoma/Myeloma and Experimental Therapeutics The University of Texas MD Anderson Cancer Center

From  the Virtual Town Meeting: Understanding the New World of Myeloma Treatment, Andrew Schorr first ask Dr. Anderson about how patients can find out about clinical trials, whether that be a governmental website, advocacy groups, or each institution’s individual website. Later he gets Lynette and Dr. Orlowski’s opinion on the matter. Check out the full video below to hear from three myeloma experts.

How Do You Find Out About Clinical Trials? from Patient Empowerment Network on Vimeo.