That’s an ASH Wrap!

That’s an ASH Wrap!

Attending the 63rd American Society of Hematology (ASH) meeting for the first time was an illuminating experience! I feel quite privileged to be a part of the International Myeloma Foundation (IMF) team and to have this educational opportunity. This was an amazing experience and I’m so grateful! Thank you, IMF and my fellow team members!

In my Pre-ASH blog, I organized the SMM abstracts into five (5) categories. To wrap things up, it makes sense to provide highlights from those categories. In some, MGUS research had insightful findings, so those are included as well. Hold on tight — here we go!

  • Prevalence/demographics: The iStopMM (Iceland Screens, Treats, or Prevents Multiple Myeloma) project provides the most compelling data in this category, as they have screened about half of the Icelandic population (40 years and older). They found that 4.9% are monoclonal gammopathy of undetermined significance (MGUS) and .5% are smoldering multiple myeloma (SMM). These numbers suggest that both precursor conditions are more prevalent than previously known. This is, perhaps, not surprising since many MGUS and SMM diagnoses are incidental. The caveat to this data is that Iceland is not very diverse. 

The PROMISE study focuses on a Black/African American sample as well as those with a first-degree relative who has a hematologic disorder. They found that the prevalence of MGUS was 10%, higher than expected. This study is ongoing as well, so more results will be forthcoming. 

  • Risk identification/disease progression: Again, iStopMM has interesting findings related to disease progression, as they have followed the screened MGUS individuals (n=3487) for three (3) years. Using a randomized control trial, MGUS screened individuals were placed in one of three arms: (1) not contacted about MGUS (n=1164), (2) followed based on current MGUS guidelines (n=1159), (3) followed with more intensive diagnostics and monitoring (n=1164). 

This table shows those who progressed to another diagnosis from each group:

 Arm 1(n=1164)Arm 2 (n=1159)Arm 3 (n=1164)
Smoldering Myeloma056 (4.8%)82 (7.0%)
Multiple Myeloma4 (.3%)12 (1.0%)16 (1.4%)
Other lymphoproliferative disorder5 (.4%)24 (2.1%)35 (3.0%)
Total:9 (.7%)92 (7.9%)133 (11.4%)
  • Treatments/preventing progression: Two strategies currently exist in treating SMM: one is treat to delay progression and the other is treat to cure. These trials are primarily for those with high-risk SMM, although one preliminary result was also reported among those with MGUS and low-risk SMM. MGUS and LRSMM patients are taking daratumumab, and most have demonstrated a response of some degree at this point in time. Longer follow-up is needed to provide a complete picture. The other result was that Grade 3 toxicities occurred in only 5 of 41 patients, while other minor side-effects occurred among more patients.

Findings in the high-risk area are also preliminary, but promising, with longer follow up needed. The following are being studied: (a) the 3-drug combo of ixazomib, lenalidomide, and dexamethasone designed to delay progression, and (b) the combination of KYPROLIS®(carfilzomib), REVLIMID® (lenalidomide), and dexamethasone (KRd) plus stem cell transplant designed to cure. 

  • Disease mechanisms: Frankly, I struggled to understand much of the work in this area. But from my perspective, it seems like various markers are being investigated which can help with earlier disease identification, and I also heard remarks about further stratifying SMM patients into those who may need less frequent follow-up, those who may need closer observation, and those who should probably start treatment. Investigators are looking at things like genomic profiles, mutations, Apolipoprotein B mRNA-editing enzyme catalytic polypeptide-like (APOBEC) activity, and clonal level markers, among other things. Again, to me this was pretty complex stuff, and I hope to learn more about some of these things in the future. The possibilities do seem quite exciting, however, even to this non-biologist. (Does anyone have a Disease Biology for Dummies book I could borrow?) 
  • COVID-19/vaccine-related information: The iStopMM project again reveals helpful information, as screened MGUS patients had similar rates of SARS-CoV-2 susceptibility and COVID-19 severity, compared to the general public. Regarding SMM patients, one study examining MM patients undergoing treatment also included a small sample of SMM patients in the “no-active-treatment” group. Since the study was focused on treatments, I didn’t see specific statistics regarding the no-active-treatment group, but the figure showed what looked like a slightly depressed response compared to the healthy control group (with no previous COVID-19), especially post dose 1 and within 10 days of receiving dose 2. 

To all who have read my blogs, thank you for your interest and attention. I hope that I’ve been able to provide valuable information and insights. I also wish you the very best, in this season of hope.

Jessie Daw, on Twitter @Daw6Jessie 

Back to the Beach and Thankful for the #ASH21 Experience

Back to the Beach and Thankful for the #ASH21 Experience

What an amazing time it has been at ASH!  #ASH21 #IMFASH21  

It was great to see the new trials, updates, and options that are available – or at least soon-to-become available. There was something for almost everyone along their myeloma journey – from monoclonal gammopathy of undetermined significance (MGUS), to smoldering multiple myeloma (SMM), to active myeloma.  

How wonderful to see the passion and interest from those within the medical community! I am so thankful for their dedication to find treatment options, protocols, and guidance for those of us with myeloma.  

It was also great to get some updates on the vaccines, COVID-19, and myeloma. With new data coming out on many questions that we have had over the past few years, this new information is highly appreciated. For example, it was amazing how the third vaccine shot really made an impact to some of the patients. I truly appreciate all the research being done so that we can try to make the best decisions for ourselves and our families with the information that’s currently available.

I want to thank the IMF for the opportunity to participate in ASH. I also want to thank the IMF and ASH for the virtual component. I feel that I gleaned just as much out of ASH virtually as I would have in-person. I hope that ASH continues to explore the virtual platform for years to come. Virtual attendance makes ASH accessible to everyone – not just to those who are able to travel.

I look forward to sharing these new updates and educational/informational updates with the MM Families Virtual Support Group!  I think that to be able to absorb and process all this information, I will go back to the beach and enjoy the blessings of the day— including the hard work and effort that so many dedicated people are making for those with myeloma.  Thank you!

Sue Massey, on Twitter @Mmfamilies_IMF

I am Thankful … 

I am Thankful … 

‘Tis the season of gratitude. During these turbulent global times, it is important to embrace the positive aspects of daily living. It is not always easy to identify things to be grateful for, especially if you are facing myeloma, COVID-19, or other personal challenges.  

Sometimes, it takes a conscious effort, but it can have a powerful impact on your outlook. I have plenty to be thankful for while attending the 63rd American Society of Hematology (ASH) annual meeting.

I am thankful for:

  • the support of the International Myeloma Foundation (IMF) and the sponsors to attend the ASH annual meetin virtually, always keeping patient safety in mind.
  • not having to travel! Did you see how much snow Minnesota got?   
  • my significant other who has already cleared 9 inches of snow!    
  • the replay option for ASH presentations. The information presented is at such a high level and at such a rapid pace, with some technical difficulties, so it is challenging to keep up. I will be spending some time watching ASH replays.  
  • the dedicated medical professionals who continue to do research and clinical practice to improve the life of my Myeloma Family. Despite the added challenges of COVID-19, their dedication has not wavered, as evidenced in the more than 500 programs, posters, and oral presentations. They and their families should be proud of their work. 
  • the amazing support group leaders who bring their perspective to this experience. In attendance are some “veterans” and some “newbies, with all impassioned. The excellent selection of SGLs brings an array of knowledge and personal experiences, representing the spectrum of this complex diagnosis. We have people who represent untreated smoldering myeloma, persistent maintenance therapy, relapsed/refractory myeloma treatment, and stem cell transplant, both Auto and Allo. Each person has an area of interest and is sharing what they learn on social media and with their support group members. Remember, “Knowledge is Power,” and this is one powerful group! 
  • every day of health and well-being for myself and my myeloma family.

I continue to be inspired by and be grateful for the dedication of the myeloma community to improve lives and to search for the cure.   

With gratitude, 

Teresa Miceli, RN BSN OCN 

Myeloma Nurse Navigator 

Mayo Clinic Rochester 

IMF Nurse Leadership Board 

Rochester MMSS SGL 

Teresa Miceli, on Twitter: @IMFnurseMyeloma