Dec 17, 2024 | Jim Shoemaker
Monday, December 16. Seven days ago, I was in meetings in San Diego overwhelmed and overloaded with information. My experience at ASH in San Diego is difficult to explain. I had the privilege to make “New Friends” and renew relationships with “Old Friends,” and it doesn’t get any better than that. The experience at ASH remains an amazing and unforgettable event, and I do not take that for granted. Each team member of the IMF contributed to a wonderful experience, and we were all blessed. I owe much thanks to the IMF for making it all possible.
I attended Dr. Sonja Zweegman’s presentation and was fascinated by the work her research group is doing with frail patients. It is a long-term follow-up of the HOVON 143 Trial. This is my best attempt to summarize with you what I learned:
The long-term follow-up of the HOVON 143 study, which involved frail patients with multiple myeloma, assessed the impact of treatment with Ninlaro (ixazomib), Darzalex (daratumumab), and low-dose dexamethasone. The study included 65 frail patients (ages 70 to 92), and after a median follow-up of 61.5 months, the median overall survival was 34.0 months, with median progression-free survival (PFS) of 13.8 months. The study also identified distinct frailty subgroups: patients who were frail based on age alone, those who were considered frail due to impairments, and ultra-frail patients with both age and impairment factors. Ultra-frail patients had worse outcomes. In contrast, patients who were frail based only on age showed better survival outcomes and were more likely to receive second-line treatment, which led to longer disease suppression.
These findings emphasize the need for more tolerable and effective therapies for frail patients, particularly those classified as ultra-frail. The study suggests that frail patients based on age alone could benefit from more intensive first-line treatments.
So much information! But the best takeaway for me, as I listened to one presentation after another: there are several prospective new therapies. I was diagnosed 17 years ago and at the time there was not much on the shelf for treatment. I am grateful for the research teams, the medical teams, pharmaceutical companies, and most of all—for the IMF.
Dec 17, 2024 | Sheri Baker
What another great experience for myself and our Myeloma Voices Team at ASH (American Society of Hematology). San Diego is such a nice place to visit, and I really enjoyed being with our in-person team as we attended the sessions together, discussed what we had heard, and dined together. We all come from slightly different backgrounds and myeloma journeys, but we all have one thing in common: The hope of finding a cure for multiple myeloma (MM).
There were a variety of abstracts that caught my eye. The first one was Saturday morning with the study that showed previous treatment with high-dose melphalan (HDM) and an autologous stem cell transplant (ASCT) adversely impacts progression-free survival (PFS) in BCMA-directed CAR-T therapy. Their findings showed that having a prior HDM/ASCT is associated with a shorter PFS to a BCMA CAR-T, but it did not impact the response rate or overall survival (OS). Which CAR-T product you received made a difference.
Ide-cel (Abecma) showed a lower complete response (CR) and a shorter PFS. But, there was no difference between the 2 groups (ASCT or no ASCT) with Cilta-cel (Carvykti) or Anito-cel (still in clinical trials). Will these findings make a difference in the future of ASCT or help to decide which CAR-T therapy is best for which patient? Further clinical trials of CAR-T therapy for newly diagnosed multiple myeloma (NDMM) patients could provide further insights into this question.
The next abstract presented by Dr. Rahul Banerjee (Fred Hutchison Cancer Center), stated that the infamous twenty-four-hour urine testing does not add value to the assessments of MM patients. Real-world analysis showed that only 28% of U.S. patients with MM had any twenty-four-hour urine testing done at diagnosis. In his study, only 1.1% of the analyzed patients had different responses between traditional and urine-free response criteria. The 24-hour urine testing is still essential in screening patients with MGRS (monoclonal gammopathy of renal significance), for example, having AL amyloidosis. But Dr. Banerjee is hoping to have the International Myeloma Working Group (IMWG) place less emphasis on the twenty-four-hour urine requirements in future revised response criteria.
An interesting study was presented by Dr. Craig Hofmeister with the Winship Cancer Institute of Emory University in Atlanta, GA. He presented a trial that demonstrated a three-dose flu vaccine series improves protection over a single flu shot. This was especially true for patients, like myself, who are on Darzalex (daratumamab). The study showed that a single flu vaccine’s seroprotection wanes by the end of the flu season. Giving the vaccine at week 1, week 9, and week 17 improves protection, especially for patients on daratumamab.
Of course, there are obstacles to this in the real-world. It can be hard to convince patients to get 1 flu vaccine, much less 3 over the flu season. And getting insurance to pay for 3 would be difficult, as would asking patients to pay out-of-pocket for 2 of the 3 vaccines. It is still an interesting study, given the older population of myeloma patients, and the propensity for serious illness from getting the flu.
Every year at ASH my takeaway is how many patients are participating in clinical trials around the world. If it were not for these patients, we would not have new myeloma treatments. At the end of every abstract presented, the doctor thanked the patients and their families for participating. I have not been able to participate in a trial yet, but it is my hope that I may be able to give back and participate one day. There is so much more, and I hope you read the blogs of my fellow Myeloma Voices Team. And join us on January 8th as we discuss the latest myeloma updates from ASH 2024.
-Sheri
@blondie1746 on X(Twitter)
Dec 17, 2024 | Rob Salmon
This was my first ASH Conference, and my expectations were exceeded.
The volume of oral and poster abstracts was overwhelming. To get through just the multiple myeloma (MM) information presented would have taken more than the three days that I was in attendance. An incredible amount of work has been done in preparation for this conference.
Many of the top doctors in the world either presented or sat through the abstracts and asked questions. The commitment to learning and collaboration was on full display throughout the conference.
The number of treatments approved and now in use has accelerated over the previous several years, and this year was no exception. Moving newer therapies to earlier lines is a big theme, with Datatumamab and Teclistamab taking center stage.
I am not going to highlight or summarize treatments. More qualified people are already hosting events where the information is readily available. For many of us with MM, this ASH was great. Better treatments are available, and more are on the way.
Not so fast…
Infections are the leading cause of mortality in patients with MM, occurring in 22 to 45 percent of patients. This statement supports the case for IVRT in one of the presentations. In another presentation, the speaker stated fifty percent of patients do not make it to the following line of therapy for various reasons. I have repeatedly heard this from doctors since being diagnosed in 2020.
This information is glaring and alarming. As we move into the era of CAR T and Bi-specifics used in earlier lines, we should assume infections will rise. More patients will learn about and require IVRT much earlier than ever before. Even without new novel therapies, MM patients need to be proactive in seeking help earlier if they suspect they are sick.
If you are not feeling well, call your doctor. Over my four years of living with MM, I’ve never had a nurse tell me I should have waited to call when I did not feel well, although I have heard a few times I should have called earlier.
I am grateful for the ongoing work done by doctors and researchers to develop better treatments and, one day, a cure for MM. Until then, I hope we all get to the subsequent line of therapy if and when it is needed.
Rob Salmon
Dec 15, 2024 | Linda Huguelet
This year’s American Society of Hematology (ASH) Annual Meeting was filled with fascinating new treatments and treatment combinations which left me thinking that there is so much more information to digest as a patient than when I was diagnosed in 2010. Over my 14 years as a myeloma patient, I’ve been through 5 lines of therapy. In conjunction with my specialists and local hematologist, I’ve made treatment decisions over the years at each relapse. I used the available information to help me have a candid discussion with my physicians before coming to a decision. Several of the options seemed fairly obvious at the time, given the more limited number of choices.
In 2010, there was no question that Revlimid (lenalidomide), Velcade (bortezomib), and dexamethasone was the way to go for upfront treatment. It was somewhat comforting that there wasn’t a need to decide on a treatment plan on day 1 when your head was still spinning from the fact you had cancer and all the new terminology. If you were transplant-eligible, it was basically assumed you would do this following your upfront cycles.
In 2024, the standard of care for a newly diagnosed patient is a combination of 4 medications which includes the addition of a monoclonal antibody – Darzalex (daratumumab) or Sarclisa (isatuximab). Which is best for each individual patient? These combinations have proven to produce very deep responses in most, so is there a need for a transplant upfront or ever? Some physicians still favor transplant, some say save it for relapse, and some aren’t convinced the exposure to the high dose chemotherapy is necessary.
At this year’s ASH, TECVAYLI (teclistamab) was presented in several abstracts as a possible future option in upfront and maintenance therapy. This drug is currently only used after multiple lines of therapy. If the trials prove this out and it gets approved by the Federal Drug Administration (FDA), this adds yet another layer of complexity to the treatment sequencing puzzle. The passion the researchers display at ASH is comforting because they are doing everything they can to provide more and better options for myeloma patients. On the flip side, this makes the need to have a myeloma specialist on your team essential to help understand the options and help you evaluate the options.
At my first Support Group Leader Summit in 2011, I vividly remember Susie Durie standing before the group and exclaiming that knowledge is power! She encouraged us to be as informed as possible and be an advocate for ourselves during your entire myeloma journey and to encourage our support group members to do the same. Those words could not ring truer today. Thanks to the International Myeloma Foundation (IMF), we have the tools to be informed. Take advantage of reading the blogs from all participants in this year’s meeting because each provides information for you to consider, call the InfoLine, ask Myelo questions on the IMF website, register for the December 18th webinar (IMWG Conference Series – Making Sense of Treatment) — do whatever works best for you to stay informed and on top of the latest developments. This will help you put all the myeloma pieces of the puzzle together more easily!
Linda Huguelet, Chattanooga Multiple Myeloma Networking Group
@LindaMYELOMA
Dec 12, 2024 | Terry Glassman
I am traveling today and then a very busy treatment day, so I’m going to do a quick post-ASH blog. Yet, if you want to hear more in-depth, check back because I promise another blog within a week.
First off, one of my fellow patients who follows me asked, “it must be hard listening to all this information.” Honestly, it was not; it was encouraging and hopeful. As I’ve mentioned before, my Myeloma Specialist told me on my first visit; “The longer I keep you alive, the longer I can keep you alive.” That sentiment stayed with me throughout ASH. It was palpable as I listened to the latest research and advances in treatment…hopeful progress everywhere!
It was heartening to see how dedicated these physicians and scientists are. So many brilliant minds sharing, questioning, and learning from each other! Sure, at times I felt like they were talking about me and us, but I’ve long come to terms with the reality of living with a serious disease. I follow that up with: I have these incredibly serious people working on controlling, and ultimately, curing it! That gives me hope, and that’s what keeps me going.
I’d also like to reiterate another mantra of mine here; see a Multiple Myeloma (MM) Specialist—it really matters!
Okay, Days 2 & 3 Quick Synopsis
Dara, Dara, Dara, Isa!
It is a big deal when a treatment changes the standard of care, and the anti-CD38 antibodies have done just that! Quadruplet therapy as a standard of care in induction therapy has shown amazing results! Even more exciting? Darzalex (daratumumab) has also been shown to prolong progression-free survival (PFS) when used in maintenance therapy. But…wait…there’s more!
Dara is showing incredible promise in high-risk smoldering multiple myeloma (HR SMM). And although Dara took up a lot of space, Sarclisa (isatuximab) showed promising results in induction therapy as well! Isa “might” change the microenvironment, which “might” slow down the rate of progression. It will be interesting to see if this theory plays out and how it plays out!
Next up: Bispecific Antibodies!
Tecvayli (teclistamab) took the center stage in a phase two study, showing promise in induction therapy as both a safe and highly effective treatment. On to phase 3, but it looks very promising. All evaluable patients achieved Minimal Residual Disease (MRD) negativity during maintenance. Patient note: Here’s where the hope keeps sneaking back in!!
Teclistamab is also being looked at in maintenance therapy and early results are positive as well as relapsed/refractory multiple myeloma (RRMM). Elrexfio (elranatamab), Kyprolis (carfilzomib) with dexamethasone are being studied as well.
SO much in the pipeline for Bispecific Antibodies! AND…as if that weren’t enough a bispecific antibody with a new target, Cevostamab is being studied in a phase one clinical trial in heavily pretreated patients and has shown meaningful activity and manageable safety in this patient population at the 160mg TD level given once every 3 weeks.
Studies with Talvey (talquetamab) and Blenrep (belantamab mafodotin) are also showing promise. Though they are sometimes considered harder to tolerate due to the negative side effects, there’s good news here: With adjustments in timing and dosage, these treatments are still effective in managing disease while keeping side effects under control.
New on the scene is Etentamig (also known as ABBV-383), a monthly dosed bispecific antibody. Early studies are promising, and it’s definitely one to watch. I personally was intrigued by its binding domain and its potential to mitigate cytokine release syndrome (CRS) More to come!
Smoldering Multiple Myeloma (SMM): New Hope on the Horizon
When a person has smoldering multiple myeloma and their myeloma is growing, doctors often consider this a “watch and wait” situation. This can be stressful and anxiety-inducing for patients, but the AQUILA study offers hope. It shows that treatment with Dara can extend time before active treatment is required in the high-risk SMM population.
Frailty
Research was presented that looked into the following: reduced dosing, decreased dexamethasone, and clinical trials including older patients. More to come on that, but I will say Darzalex (daratumumab), Revlimid (lenalidomide), or DR outperformed Revilimid (Lenalidomide) and dexamethasone (Rd) in the frail population…down with Dex!!
I’ll stop here for now with the promise to return and further clarify. I hope to share more information once I stop long enough to look at my notes and absorb the immense amount of information I took in over the past three to four days! This is by NO MEANS a comprehensive review; it’s just what caught my attention. Again, I remind all who are reading, this is the takeaway from me…a humble fellow MM patient, and it is how I personally understood the information presented! I hope it gives you a good starting point to delve deeper into the information yourself and discuss what you find with your care team.
It’s exciting to see all this research across the spectrum of treatment lines. It is a non-ending quest for better, safer, and more effective treatment of MM. I was humbled and honored to be a part of the IMF team, and this nerd can’t wait to look at a few of the presentations I did not get to attend! I did have a focus on High-Risk Multiple Myeloma (HRMM), but I did not find much discussion on this. Yet, many studies did include high-risk patients. I will delve deeper in the coming days and share what I find.
That’s it for now! I’ll be back soon with a more detailed post on what I’ve learned from ASH. Thanks for following along and remember: There is always hope! Stay strong, keep fighting, and always reach out to your specialist and team with any questions you may have! They are working every day for us!
HOPE
Hardworking MM specialists and oncologists.
Optimism SO much research for newly diagnosed and those exposed to many lines.
Patients…the center of it all!
Energy! That is what I saw most at ASH an uncontainable energy to do more, know more, help more!
Dec 12, 2024 | Barbara Davis
ASH24 is over, but my head is still full of information, words, questions. I guess my biggest takeaway is how optimistic I am about the future of multiple myeloma (MM) treatment. I remember when I was first diagnosed in 2007 and my options were Revlimid and Velcade, plus lots of dex. The list of approved therapies now exceeds, well, too many to type here! Every year at ASH there is a list of drugs and treatments that are being studied, and many of them go on to FDA approval. It seems like only a year ago that Car-T therapy was being trialed and now it’s moving to a frontline therapy for certain patients!
It’s a bright and shiny world for those of us with myeloma. I want to thank the International Myeloma Foundation for inviting me to attend this conference and our pharma partners who generously stepped up to sponsor us. It’s going to take a lot of effort to find a cure for MM, but I’m hopeful that I’ll see it in my lifetime!
