Post-ASH: Words Matter

Post-ASH: Words Matter

As I’m writing my last blog for ASH 2021, I am inspired to write about the topics that stoked my fire. You know, the ones that were a gut check, the ones that I couldn’t stop thinking about, the ones that I felt deep down in my soul —topics that I feel are ones to provoke deep thought and subsequent action. This is not to say that the scientific research, new data, amazing advancements, and hard work that the 879 myeloma-related abstracts aren’t of utmost importance —they are, and they will continue to guide the future of research in myeloma for years to come. 

As an oncology nurse, my focus always seems to home in on the patient’s quality of life. The pure definition of quality of life is the standard of health, comfort, and happiness experienced by an individual or group. To fully understand how oncology care affects a patient’s quality of life, as providers, we must put ourselves in their shoes. What would matter to us? What would be a game-changer and what would be non-negotiable for us? What would be acceptable? 

This is why words matter. In the oncology world, we throw around words and phrases that aren’t meant to be maleficent or to bring negative connotations to patients but can ultimately do so. While listening to the many abstracts being presented and countless hours of discussion between providers and experts in the myeloma field, I hear many of these words or phrases and they bring a pause to my thoughts. 

Again, I want to clarify, I don’t believe anything negative is ever meant when saying them, but I think of how patients must feel when we say them. The first phrase that comes to mind is “patient failed study.” Let’s examine these simple three words. Failure is defined for us early in life by test-taking in school or by letter grades on a report card. 

Further in life, failure can be viewed in a more mature and scholarly way as a motivational factor for progress and the truth is, we all fail at things —it is how we recover from them that proves our steadfastness. But how does a patient feel when hearing “you’ve failed the study?” Providers don’t purposely say this phrase to hurt or affect the patient negatively. It is simply a phrase that says this is not working and we need to move on to something different. However, that’s not how it could be viewed by a patient. A patient could very much take this phrase personally and feel a strong sense of guilt and regret that they’ve done something wrong to “fail this study.” 

Another phrase that I think, as a whole, needs to be changed to become a more acceptable phrase is the term, “salvage therapy.” Salvage therapy, by definition, is treatment that is given after the cancer has not responded to other treatments. Why couldn’t the words, secondary treatment, tertiary treatment, etc. be used instead? From a patient’s perspective, isn’t that a much more palatable term in an already stressful and anxiety-producing situation? How about “manageable side effect profile?” 

I have a firm viewpoint that the only way that a researcher can define a drug as having a “manageable side effect profile” is by giving patients the chance to define that. Who are we, as researchers, to define what is or what is not manageable for a patient? An example that I can give is something along the lines of “only 10% of patients experienced neutropenia.” As oncology providers, we know that neutropenia can be quite severely life-changing. Necessary dietary changes, social isolation, risk of infection, anxiety about all these things, depression due to all these changes —these don’t quite seem like something that, as a patient, I would determine to be “manageable.” Let us let patients define what’s manageable, not us!

For the last few months in my support group, we’ve been examining the term, “care partner” rather than caregiver. Patients and their support both can view the term caregiver in a negative light. In my experience as an oncology nurse, care partners need care as well! The patient is not the only person diagnosed with cancer. Cancer affects everyone in the situation, friends and family alike. Patients and care partners truly do look to each other as partners in this roller coaster after diagnosis, and that’s a healthy way to view the relationship. This healthier viewpoint allows both parties to actively verbalize their emotions, let go of guilt, and communicate more effectively about their needs throughout the cancer journey. 

To me, awareness can be a catalyst for change. Ignorance is not always purposeful. If making others aware of these phrases or terminology helps to motivate more thoughtful choices in the future when it comes to terminology, then our job is not in vain. 

Please, as a whole, let’s do better! Let’s educate, bring awareness, be the catalyst —our patients depend on us! This picture is of a t-shirt that I designed several years ago for the MD Half Marathon Myeloma Team. I love all the words on the ribbon that truly define myeloma patients: WE CAN AND WE WILL!

As I close out this last blog for ASH 2021, I need to try to use words to explain my gratitude to the IMF and our sponsors for the opportunity to attend ASH, to represent support leaders across the country, and to bring my viewpoint to social media outlets. I feel humbled, grateful, and blessed yet these words just don’t seem enough to express my thanks. We were asked to provide one word to describe how we felt about ASH 2021. What was mine? INSPIRED.

Becky Bosley, on Twitter @MidAtlanticMSG 

Algorithms:  Which Treatment and When?

Algorithms: Which Treatment and When?

I am so thankful and impressed with the content and variety of topics that the #IMFASH21 support group leaders are reporting through their blogs. Each brings important highlights that will be helpful in Support Group discussions.  

For those who do not attend a support group, this information can be helpful to review and discuss with your healthcare team. Staying up to date on myeloma, its treatments, side effects and clinical trials is key to our futures, as we decide on next potential therapies.  

My blog today will focus on “Filling in the Spaces” of information from other leader blogs. Yelak Biru wrote an excellent blog on #ASH21 Trial Design Acronyms.  Along with that, I thought it would be helpful to add the treatment algorithms below. 

Please remember that these are just general recommendations, but they are a good starting point for conversations with your own healthcare team.

New Myeloma or Smoldering Myeloma:

Myeloma: Frontline Treatment

Myeloma: First Relapse

Myeloma: Second or Higher Relapse

Additional Charts that I found helpful:

On the above chart, please note that panobinostat was withdrawn by the FDA in the US but not in Europe.

These algorithms are CURRENTLY the best options to think about but as we all know, things change. 

Keep learning, keep sharing, and remember — you are not alone!  

More information on the myeloma support groups can be found HERE. You can also contact me at [email protected]  

Knowledge is Power!

Robin Tuohy, on Twitter @IMFsupport 

#ASH21 Trial Design Acronyms

#ASH21 Trial Design Acronyms

I was going to write something insightful – my biggest takeaways – from the last two days of the 63rd annual meeting of the American Society of Hematology (ASH) meeting. I started saying that: 

  • the MASTER trial was very patient-centric; it had over 23% African Americans enrolled in the trial, the MRD response adopted treatment secession strategy is innovative, the trial enrollment was enriched and powered for high-risk patients, and the MASTER-2 trial design is future-looking, the result of 
  • the GRIFFIN trial could be setting quadruplet (dara-RVd) standard of care for high-risk patients in those countries where dara is approved and can afford it
  • the near 100% ORR, deepening stringent complete response (sCR) at year 2, results of CARTITUDE-1 are going to be game-changing and an indicator that myeloma has indeed entered the era of immunotherapy 
  • the OPTIMUM data showed the benefit of adding a CD38 to a quadruplet for those prospectively identified as having ultra high-risk disease by gene expression profile (GEP) 

Then I said, what were the drugs in the GRIFFIN trial again, and what are the randomization criteria for those trials with one?  That is when I pivoted to collecting the trial design in one place for some of the clinical trials presented or referenced at #ASH21.  Below is a non-exhaustive list of trial designs for us clinical trial mortals. In no particular order: 

OPTIMUM [Daratumumab, Cyclophosphamide, Bortezomib, Lenalidomide, Dexamethasone (Dara-CVRd), V-Augmented Autologous Stem Cell Transplant (V-ASCT) and Dara-Vrd Consolidation in Ultra-High Risk (UHiR) Newly Diagnosed Myeloma (NDMM) and Primary Plasma Cell Leukemia (pPCL) Compared with Myeloma XI/XI+ Trial Treatment for Uhir MM: The UK Optimum/Muknine Trial (Clinically Relevant Abstract)]

MASTER [Daratumumab, Carfilzomib, Lenalidomide, and Dexamethasone (Dara-KRd), Autologous Transplantation and MRD Response-Adapted Consolidation and Treatment Cessation. Final Primary Endpoint Analysis of the Master Trial] 

CASSIOPEIA [Daratumumab (DARA) with Bortezomib, Thalidomide, and Dexamethasone (VTd) in Transplant-Eligible Patients (Pts) with Newly Diagnosed Multiple Myeloma (NDMM): Analysis of Minimal Residual Disease (MRD) Negativity in Cassiopeia Part 1 and Part 2]

MAIA [Daratumumab, lenalidomide, and dexamethasone versus lenalidomide and dexamethasone alone in newly diagnosed multiple myeloma (MAIA): a randomized, open-label, phase 3 trial]

Forte [Evaluation of the Safety and the Efficacy of Carfilzomib Combined With Cyclophosphamide and Dexamethasone (CCyd) or Lenalidomide and Dex (CRd) Followed by Autologous Stem Cell Transplant (ASCT) or 12 Cycles of Carf Combined With Dex and Len for Patients Eligible for ASCT With Newly Diagnosed Multiple Myeloma] 

GRIFFIN [Study Comparing Daratumumab, Lenalidomide, Bortezomib, and Dexamethasone (D-RVd) Versus Lenalidomide, Bortezomib, and Dexamethasone (RVd) in Subjects With Newly Diagnosed Multiple Myeloma]

GMMG-HD6 A Phase III Trial on the Effect of Elotuzumab in VRD Induction /Consolidation and Lenalidomide Maintenance in Patients With Newly Diagnosed Myeloma (GMMG-HD6)

GMMG-HD7 Trial on the Effect of Isatuximab to Lenaliodomide/Bortezomib/Dexamethasone (RVd) Induction and Lenalidomide Maintenance in Patients With Newly Diagnosed Myeloma (GMMG HD7)

CARTITUDE-1 A Study of JNJ-68284528, a Chimeric Antigen Receptor T Cell (CAR T) Therapy Directed Against B-Cell Maturation Antigen (BCMA) in Participants With Relapsed or Refractory Multiple Myeloma. Please note there are now CARTITUDE-2, 3, 4, and 5 in progress. You can read about them at site 

CC-220-MM-001 [Iberdomide (IBER) in Combination with Dexamethasone (DEX) in Patients (pts) with Relapsed/Refractory Multiple Myeloma (RRMM): Results from the Dose-Expansion Phase of the CC-220-MM-001 Trial]

Bb21217 [Study CRB-402 a BCMA-Targeted CAR T Cell Therapy, bb21217 is a 2-part, non-randomized, open label, multi-site Phase 1 study of bb21217 in adults with relapsed/refractory multiple myeloma (MM). KarMMa is the bb2121-MM-001, the original bb2121 study]

MajesTEC-1 (Phase 1/2 Study of Teclistamab, a B-Cell Maturation Antigen x CD3 Bispecific Antibody, in Relapsed/Refractory Multiple Myeloma)

iStopMM [A Nationwide Phase 2 Trial of Patients With Smoldering and Active Multiple Myeloma (MM) (iStopMM)]

I hope this list of clinical trial design in one place will be helpful for patients, advocates, and those who don’t always speak myeloma. 

Sharing The Hope!  

Yelak Biru, on Twitter: @NorthTxMSG  

Connecting with Others

Connecting with Others

“The most important things in life are the connections you make with others.”—Tom Ford

While I am grateful to be attending ASH 2021 virtually this year, I do miss the experience of interacting with my fellow International Myeloma Foundation (IMF) Support Group Leaders (SGLs). I have fond memories of sharing meals with other SGLs and learning so much about their families, their professions, and the impact that myeloma has on their lives. I still remember my first ASH experience where I learned so much about the diverse histories of the amazing people with whom I attended. We were united by the common thread of myeloma.

I am particularly grateful to be attending this year’s ASH virtually because my dedicated dog is in “hospice” with worsening anorexia and plummeting weight loss. Despite her condition, she follows me to my office where I continue to learn more about the current and latest treatments for this unshakable disease. I remember her squeals when I came home from California from my stem cell transplant 11 years ago. I so appreciated her staying up with me when I had steroid-induced insomnia. In the middle of the night when I awoke with racing thoughts about my disease, my family, and my future, she was right there by my side. I will miss her dearly.

Don’t get me wrong, the amount of information I continue to learn is truly valuable and I look forward to sharing this knowledge with my local Support Group members. Most of our local meetings are highly informative and we learn about current therapies, new drugs, and their side effects. However, there is no real substitute for getting together in-person to communicate and share ideas and stories about our families and our treatments.

Listening to experts from across the globe means connecting with people who are committed to finding a cure and improving the lives of myeloma patients. We learn to appreciate their dedication to research and clinical trials. We anticipate hearing from them, year after year, as their research progresses from phase I to phase II studies. Even though we don’t know them personally, we start to develop a connection to them — somewhat like a favorite actor, musician, or athlete.

John DeFlice, on Twitter @johnde1MYELOMA