Power Over Your Mind

Power Over Your Mind

“You have power over your mind – not outside events.  Realize this, and you will find your strength.”—Marcus Aurelius, Meditations

As the 63rd annual meeting of the American Society of Hematology (ASH) wrapped up this week, I am looking to the future with hope and excitement. I admit my brain is a bit tired from trying to process all the technical data, but I am trying to have power over my mind!

Since I have relapsed twice in my 10 years of living with multiple myeloma, I tend to be very interested in any studies or information pertaining to my options at relapse.  This chart shows that there are many options and combinations available.

This year’s ASH had many updates on key clinical trials. Many of the trials were for heavily pre-treated patients who are running out of options.  My other teammates have summarized this information better than I could.  However, there was one presentation by Dr. Thomas Martin (UCSF Helen Diller Family Comprehensive Cancer Center – San Francisco, CA) with an update on the CARTITUDE-1 trial that got my attention. This is a study of a B cell maturation antigen (BCMA) directed CAR T-cell therapy called Ciltacabtagene autoleucel (cilta-cel) for heavily pre-treated, relapsed/refractory multiple myeloma patients.  When Dr. Martin took the stage, you could see the excitement in his face.  He was excited to present the data but more importantly, I think he was happy to be there, presenting to his colleagues who were able to attend in-person.  

At the International Myeloma Foundation (IMF) Best of ASH presentation, Dr. Brian G.M. Durie (IMF Chairman of the Board) commented that cilta-cel could have FDA approval by the first or second quarter of 2022.  

Last year’s ASH was all virtual.  I watched everyone make their presentations virtually.  And it is just not the same.  Even though we were virtual this year, you could sense the excitement from those who were there in-person during their presentations in front of colleagues. 

For those able to attend this year’s ASH in-person, it must have seemed like a family reunion.  So many doctors tweeting out pictures with friends or colleagues whom they haven’t seen in 2 years.  And all these myeloma doctors and researchers from all over the world work so hard to find ways to treat and hopefully, cure multiple myeloma one day.  I am in awe of what they do, and I am deeply grateful for their dedication.  

Finally, I was amazed by the Support Group Leaders’ participation in the International Myeloma Foundation’s (IMF) ASH team this year.  As I go back and read their blogs, I was amazed at the diversity of the topics. I urge you to take some time to read their blogs.  They are all so very interesting, and all from a slightly different point of view.  That’s what makes us a great team!  

Stay well and stay strong!

Sheri Baker, on Twitter @blondie1746 

ASH 2021 May Be Over, But This is Not the End

ASH 2021 May Be Over, But This is Not the End

On Monday, the 63rd Annual Meeting and Exposition of the American Society of Hematology came to an end. The hybrid model worked for the most part. Like any live event, there were technology hiccups here and there. 

Here are my five takeaways from the meeting. 

  • Screening for myeloma will become the future. The iStopMM (Iceland Screens Treats or Prevents Multiple Myeloma) team had four live presentations related to smoldering multiple myeloma (SMM) that indicated about 0.5% of the Iceland population has the precursor condition called monoclonal gammopathy of undetermined significance (MGUS); those who were screened did not have an increase in psychological distress. However, primary investigator Dr. Sigurdur Kristinsson (Professor of Hematology — University of Iceland) insisted that we should wait until after the data matures in a few years before making screening standard of care. 
  • The era of immunotherapy is here. With cilta-cel showing a near 100% overall response rate, and with the deepening of the stringent complete response (sCR) from year one to year two, as well as various B cell maturation antigens (BCMAs) and antibody drug conjugates (ACDs) showing significant response rate for highly refractory patients, it is my hope that they will be approved and will be made available to myeloma patients. 
  • CD38 antibody quadruplets will become the standard of care. For newly diagnosed patients, multiple studies have shown that the addition of CD38 drugs such as DARZALEX® (daratumumab) and SARCLISA® (isatuximab-irfc) have shown a higher rate of sustained minimal residual disease (MRD) negativity with minimal increased toxicity. 
  • MRD adopted therapy is more significant than ever before. While MRD adopted therapy is not yet the standard of care, patients are waiting for it to be. Myeloma patients are living longer and longer, thanks to newer drugs coming to the market. It is also important to note who will benefit from a drug holiday and who will benefit from a more intense treatment. 
  • Address the needs of ultra high-risk patients. The needs of ultra high-risk patients continue to be significantly unmet, especially for those with progressing myeloma despite going through the best treatments. I encourage those who are in this risk category to seek clinical trials, and those who are in a position to design clinical trials to work with urgency to address these needs. 
  • Stem cell transplant is here to stay. Despite challenges faced in terms of benefits vs. risks, stem cell transplant continues to be a part of the myeloma arsenal. 

While ASH may be officially over, we have several post-ASH meetings coming up! Check out https://myeloma.org for details.

Until next time! 

Sharing The Hope! 

Yelak Biru, on Twitter: @NorthTxMSG 

Day 3:  Focusing on Priorities Amid All the Details —Time to Reset!

Day 3: Focusing on Priorities Amid All the Details —Time to Reset!

During yesterday’s blog, I focused much on details of studies, trying to absorb as much of the scientific data as possible. As a nurse who hasn’t had formal training on data collection and research, it can be very easy to get lost in that data. I found myself feeling like I was in the middle of a tornado, spinning around in circles, and grabbing ahold of whatever I could, information-wise. 

ASH is intense! 879 Abstracts at ASH 2021 focused on multiple myeloma — that’s a TON of information to soak in in 4 days! I decided to take a step back and refocus on my goal. I took advantage of some of the mindfulness exhibits available to try to calm the storm! This storm is not a negative one, I want to be clear on that. The information storm that I speak of is simply a lot of information in a short time. I do appreciate the ability to view the abstracts for the rest of the month and absorb more information, including details, from each one. 

My personal goal for attending ASH this year was to be able to communicate information from the research back to my support group members and their care partners. It seemed like a simple goal when I made it, but when given this amount of information, it is so easy to get stuck in the weeds about what parts to report on, what details are important. 

What is REAL LIFE info that patients will benefit from? I have to admit, sitting in front of my laptop for 10 hours straight, feverishly taking notes, snapping screenshots, looking up keywords, making outlines, and trying not to miss a word of this important information being shared was OVERWHELMING! I started to reevaluate my strategy for moving through the rest of the conference, and to be real with myself! I’m not going to catch every word or understand every definition or statistic. I’m not going to remember all the data and be able to recite it word for word. That’s not realistic, nor attainable!

My major takeaways from Sunday’s oral and poster presentations: 

• I appreciate, more than words can say, myeloma specialists who can present incredibly technical information in a way that is understandable! Drs. Luciano Costa (O’Neal Comprehensive Cancer Cen ter University of Alabama — Birmingham, AL) and Thomas Martin (UCSF Helen Diller Family Comprehensive Cancer Center — San Francisco, CA) are two of the best! Truly personable, funny, and down-to-earth enough to be able to simplify some incredibly difficult information! Thank you, from patients and nurses alike! 

• It is important to acknowledge the financial disparities between the US and the rest of the world when it comes to drug costs and availability. We have to do better so that patients can have access to proven therapies. 

• Ciltacabtagene autoleuce (cilta-cel) is EXCITING! Updates to 24-month progression free survival and overall survival data were presented and look incredibly positive. With an updated Prescription Drug User Fee Act (PDUFA) date in February 2022, there is much anticipation for this therapy for at least triple refractory patients. Hopeful that the manufacturing slot availability will be able to support the almost assured demand!

• I overheard a comment made when discussing the diversity profile of a study group of a particular clinical trial that stated that the 17% African American participation in this trial was “impressive and encouraging.” This makes me sad when less than 1/5 of the study population being minority is encouraging! We need to do better with recruiting more minority subjects into myeloma clinical trials. With a disease that clearly has a great impact on the African American population, we need to do better getting an appropriately diverse study selection when researching and learning more about it!

Share Hope. Education is Power. Stay excited and motivated for the future!

Becky Bosley, on Twitter @MidAtlanticMSG