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 

Searching for the ‘Magic Wand’

Searching for the ‘Magic Wand’

What a whirlwind of information it was this weekend! #ASH21 #IMFASH21  

We learned about new and exciting studies related to monoclonal gammopathy of undetermined significance(MGUS) smoldering myeloma (particularly high-risk), and then active myeloma. I am so blessed to be able to participate in these presentations and gain this new level of insight into the myeloma world.

As a current high-risk myeloma patient with two young children, I started out as high-risk IGA MGUS and then developed high-risk smoldering myeloma (SMM). However, I continue to hope for a “magic wand” (as my son says) to cure this disease.  Therefore, I am writing this blog from that perspective: (1) to encourage other multiple myeloma patients and caregivers, especially those with young children; (2) to provide uplifting information; and (3) to empower those with myeloma through these new educational resources.

As a previous high-risk IGA MGUS patient who had it for almost five years, the new studies out of Iceland with the iStopMM (Iceland Screens,Treats, or Prevents Multiple Myeloma) Study showed the importance of tracking MGUS.  Depending on which type of MGUS you have, MGUS may have a greater tendency to turn into active disease.  The iStopMM Study demonstrates the importance of tracking the disease so that doctors can monitor who may or may not progress into a different stage. Tracking the disease at an early stage allows myeloma patients and their medical team to monitor it carefully and decide when and if to move on to doing treatment. With early detection, a person can hope to avoid certain struggles and issues that they could face without early treatment.  

If a patient moves from MGUS to smoldering myeloma, wow! What choices are coming down the road!  Very exciting!  As a patient who went from high-risk smoldering myeloma to active myeloma within 8 months, it is so encouraging to see the latest studies that show the benefits of treatment on high-risk SMM. It used to be that many high-risk SMM patients would use the “watch and wait” approach.  While that still is a viable option (as there are considerations of starting therapies), it seems that there are some great outcomes when treating high-risk SMM patients.  Some studies are showing promising results by using Kyprolis® (carfilzomib), Revlimid® (lenalidomide), and dexamethasone (also known as KRd) and even KRd with a stem cell transplant. [Carfilzomib, Lenalidomide and Dexamethasone (KRd) as Induction Followed by HDT-ASCT, Consolidation with KRd and Maintenance with Rd.  GEM-CESAR, paper 1829.]

If the patient then goes into active myeloma, again – I just have to say, wow!  There are all sorts of options!  There were a lot of presentations that added daratumumab to various drug combinations. From a non-medical standpoint, it seems that in most cases, Dara added to these various drug combinations increased the survival rates and deepened the responses.  However, for some patient groups, Dara wasn’t always the “magic wand.” While Dara may still help that segment of myeloma patients, it was not as effective as it was in other groups.  But overall, it was great to know about the effectiveness of the drug, and how Dara provides another available option in the treatment arsenal in this myeloma journey.

Another interesting topic point was the discussion on CAR T therapy and minimal residual disease (MRD) negativity.  CAR T therapy may be another treatment option for myeloma patients that could beneficial. Again, looking at it from a lay person’s perspective, it seems that CAR T therapy has advanced and some of the side effects have gotten a bit better. The stats related to progression free survival (PFS) and overall survival is amazing!  It is also exciting to see how CAR T affects MRD negativity. MRD negativity seems to be a key factor in a person’s success in their myeloma journey. It is interesting to see how CAR T continues to develop as part of the myeloma treatment plan.

One of the primary outcomes of attending ASH this weekend was gathering INFORMATION!  While I may not completely understand the ins and outs of the therapies, drugs, side effects, charts, stats, and everything else (my head is still spinning!), ASH provides the latest information that allow for intelligent and meaningful conversations with the medical/treatment team.  

Information allows myeloma patients to be empowered, be their own advocate, and partner with their healthcare team to help make the right decisions with current available information.  By learning more about different treatment options, myeloma patients can ask questions like: Is the current treatment plan still the best approach?  Are there novel advances that may work better at the current stage of myeloma? Is now the best time to hit myeloma harder?  For all these questions, I have no answers.  But, by learning about new treatment options and therapies, myeloma patients are empowered to talk to their doctors about options and to see if status quo is the way to go or if there are any changes that should be considered based on the new research.  

Furthermore, as most people on this journey know, each person’s path is unique and can change at any moment.  I believe that partnering with your medical team is key to understanding what is right for each person’s situation and their type of myeloma.  This concept was supported by some of the studies which are researching the need for personalized therapies. [A Machine Learning Model Based on Tumor and Immune Biomarkers to Predict Undetectable Measurable Residual Disease (MRD) in Transplant-Eligible Multiple Myeloma (MM), Paper 1596.]

I have learned so much this weekend!  It was interesting to see the developments that are happening within the myeloma community.  The treatments are advancing every day.  Hopefully, one day, we will find that “magic wand.”

My son and what he would love to be his magic wand!

Sue Massey, on Twitter @Mmfamilies_IMF