Mental Health and Myeloma Research

Mental Health and Myeloma Research

As I mentioned in my previous blog, “What are You Going to Fill Your Glass with?” I reviewed a variety of sessions dealing with various aspects of mental health. Almost all of them were poster sessions, which I personally like because they have such a different feel from oral presentations (at least in my field; I imagine it’s the same at ASH). 

In poster sessions, posters are placed in aisles, and you get to walk around a large room with the presenters standing nearby. You can stop and chat with the presenters to ask questions and make comments. The experience is much different from the typical 3-minute Q&A session done in oral presentations. 

However, virtual poster sessions consist of poster images along with submission abstracts — there wasn’t any opportunity to engage with the researchers. Nonetheless, there were some interesting projects and I’m going to highlight some of those findings in this blog. 

One interesting study examined psychological distress and quality of life, along with prognostic awareness, by line of therapy in those with multiple myeloma. Regardless of the line of therapy, about a quarter of all patients demonstrated clinically significant levels of anxiety, depression, and post-traumatic stress disorder (PTSD).

While a quarter doesn’t represent a majority, it is still a high number. Furthermore, the study did not report the overlap (or lack thereof) among patients. For example, 25% of the patients could have reported all three; 25% could have reported anxiety; while a different 25% could have reported depression, etc. 

This study also looked at prognostic awareness. They found that over 90% of patients felt like prognostic information was helpful in making decisions about treatment. Over 85% said that prognostic information helped with coping, as well as making future plans. While 85% indicated that their oncologist told them that their myeloma was incurable, only 42% thought it was incurable; 30% reported that they had a terminal illness. 

These patients reported significantly higher depression, anxiety, symptom burden, as well as lower quality of life. The authors concluded that intervention is needed to help patients reduce distress, improve quality of life, and develop various coping strategies that can be helpful over the multiple myeloma disease pathway. 

Another project explored interest in and feasibility of a lifestyle intervention program for those with myeloma. These researchers intentionally sought a diverse sample: the 38 myeloma participants consisted of 54% White, 46% Black, 54% Female, and 46% Male. The majority (55%) have not received lifestyle counseling from their healthcare team, but almost 90% were interested in a lifestyle program. Specific areas of interest included social support, guided/personalized exercise, meal preparation support, and flexibility. These results also revealed a significant gender difference in perceived emotional support, informational support, instrumental support (i.e., tangible support, like mowing the lawn or other physical tasks), and companionship, with females reporting higher support in all these areas. 

Taking this intervention program support a step further, another study is in process, and is looking at the effectiveness of digital life coaching during the autologous stem cell transplant (ASCT) process. This study focuses on a specific event in the myeloma pathway (SCT) and thus has a more focused time point. 

Based on a pilot, which consisted of life coaches meeting with patients digitally and connecting every 5-7 days, they are now launching a phase II trial looking at a digital life coaching program compared to typical SCT care. An interesting element of this study is that one of the outcome measures will be the use of sedative-class PIMs, such as lorazepam, temazepam, and similar medications. They will also compare patient-reported outcomes (PROs) including quality of life, emotional distress, and sleep disturbance. 

The last project I want to highlight also doesn’t have results yet but has garnered a lot of attention during ASH – the iStopMM project. This project will be reporting on mental health correlates and outcomes in the future, and that data will be highly anticipated, I think!

Mental health is important. It influences how we handle stress, how we make healthy choices, how we think and feel about our lives and our relationships, and how we rely on our ability to adapt to changes and cope with challenges we encounter in everyday life. It’s encouraging to see research addressing mental health among myeloma patients!

Jessie Daw, on Twitter @Daw6Jessie 

Day 1: A Long but Inspiring and Encouraging Day

Day 1: A Long but Inspiring and Encouraging Day

The first official day of ASH activities started at 6:30 a.m. with the International Myeloma Working Group (IMWG) Breakfast Meeting. The IMWG is exactly that — a working group of myeloma experts from across the world, who come together periodically to investigate and create new guidelines for everything myeloma. They form different subgroups to review, collaborate, and make recommendations for new, up-to-date guidelines on many topics.   

What a blessing it is to be in a room with this much talent and passion for myeloma! I feel very honored to have been given this opportunity to experience such collaboration and cooperation between experts for the good of myeloma patients all over the world.  

Now, on to the oral presentations. Some highlights from Day 1 include: 

  • Exciting information coming from the most recent update of the Griffin Study. This study is looking at Dara plus RVd in patients with ASCT eligible Newly Diagnosed MM and updated analysis includes subjects after 24 months maintenance treatment. It appears that the quad therapy yielded 81% MRD negative subjects vs the 44% with only the triplet VRd therapy. We know that sustained MRD Negativity is more important than one snapshot, but so far, 6-month and 12-month MRD negativity remain improved with quad therapy. Will this study further direct quad therapy as SOC in induction therapy and then dual therapy in the maintenance phase?  
  • Also, final analysis of the BELLINI study supports a biomarker-driven approach in the current Venetoclax development program in t (11;14) RRMM. Consistent results from this study are showing improvement in PFS and OS in patients with t (11;14) or BCL2 high expression. 
  • Liquid biopsies are gaining strength in research! Will checking circulating plasma cells in initial workups of patients and monitoring throughout disease management be the new standard, rather than serial bone marrow biopsies?  
  • For many studies, one of the AIMS is to eliminate dexamethasone from the commonly used regimens. This is good news when it comes to quality of life for myeloma patients. In the future, we may be able to remove this drug that, while effective, causes many patients so many side effects that affect quality of life.  
  • Bispecific antibodies are up and coming! Different targets are being researched including BCMA and GPRC5D, among others. Promising data from Phase I studies, doses are being escalated and safety profiles are being identified.  
  • iStopMM is a screening that is an unbelievably HUGE undertaking, giving endless amounts of data and assuredly, for years to come! Symptomatic screening for MGUS hasn’t been studied before, and the study’s aim states to determine if early detection can lead to the possibility of cure. Less than 2-6% of myeloma patients are diagnosed at precursor states. So how can we find them early? This Icelandic study had around 150,000 subjects show interest, with about 75,000 screened in the study. Of this group, 3,725 patients were found to have MGUS. Then this group blindly randomized into 3 arms: Arm 1 (current standard of care), Arm 2 (current IMWG guidelines), and then Arm 3 (more intensive follow-up). Initial findings are promising, but no recommendations are to be made until further research continues. Additional study looked into MGUS and COVID-19. Of 72,000 eligible subjects, 32,000 were tested. Results show that MGUS does NOT increase risk of contracting COVID, nor does it make the effects of the virus more severe, if infected. GOOD NEWS! Ideas for future research on this study population include evidence of chronic allergies/auto immune diseases/familial linkage —an important and expansive research! 
  • Reports given for dose expansion phase of iberdomide — a novel IMiD therapy, like Rev/Pom, but big differences exist. Iberdomide is tumoricidal, while Rev/Pom are not. Also, side effect profiles are completely different, as iberdomide appears to be more easily tolerated, with typical IMiD-related events like GI effects, rash, and fatigue not noted. This is exciting news, again, for quality of life!  

Final thoughts of the day: new and upcoming promising therapies are simply not cost-efficient or accessible for most patients. How do we improve access to these new therapies that can offer so much hope? For some patients that do not have access to large academic centers with myeloma specialists actively involved in their care, will these therapies remain unreachable to them? How do we bridge the gap? Food for thought!  

Also, I am grateful that so many studies have a focus of improving quality of life for patients. This should ALWAYS be the AIM. Some thoughts from an oncology nurse, who is passionate about myeloma and from our 10-month-old, 110-lb. Newfoundland puppy, Bean, who just wants to have some attention today. 

Becky Bosley, on Twitter @MidAtlanticMSG 

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