My First ASH Conference: Expectations Exceeded

My First ASH Conference: Expectations Exceeded

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

Post-ASH Reflections/Highlights Days 2 & 3

Post-ASH Reflections/Highlights Days 2 & 3

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!

More Questions Than Answers

More Questions Than Answers

After yesterday’s abstract sessions, I think I have more questions than answers. Not exactly what I was hoping for, but questions do lead to more investigation and knowledge. There was a lot of discussion about the use of TECVAYLI (teclistamab). This bi-specific antibody is currently used only in later lines of therapy, but trials are now looking at it as part of induction and maintenance therapy.

This constant review of combinations may lead to even deeper initial responses, which is certainly the goal, so it’s certainly worth exploring. But the current induction standard of care quadruplet of Darzalex (daratumumab), Revlimid (lenalidomide), Velcade (bortezomib), and dexamethasone seems so effective for most patients that I continue to question whether you would not save bi-specifics for later use in your myeloma treatment arsenal.

Treatment sequencing is an ever-perplexing issue – somewhat of a blessing and a curse. A blessing because that means we have many more options to select from and a curse because it is ever more difficult to select the correct sequence as well as to understand how sequencing can be tailored to each patient’s situation.

Some of today’s abstracts will provide some insight into real-world data on how bi-specifics and CAR T-cell therapy are performing, which I am looking forward to.

I am also very excited about the Facebook live session this evening featuring Dr. Joseph R. Mikhael (“Dr. Joe”) and his thoughts on the conference highlights and he will be taking questions as well. It may be late for my group on Eastern time, but it will be worth it!

Saturday Was a Mixed Bag of Interesting News and Study Updates

Saturday Was a Mixed Bag of Interesting News and Study Updates

Regarding sequencing of CAR T: Prior High-dose melphalan (HDM) and stem cell transplant was associated with lower progression-free survival (PFS), but it does not seem to impact overall survival (OS). A question from Dr. Banerjee (MM celebrity), ”Would collecting stem cells and T-cells before transplant fix this problem?”

Hopefully, a study will be conducted to address this.

One of the big new studies by Dr. Banerjee was looking to see if our least favorite lab test, the twenty-four-hour urine, is still needed in light of better testing. The answer is NO! (with several caveats). It is still needed at initial diagnosis or if Bence-Jones proteinuria is the only marker of disease. The hope is that this new recommendation will be adopted by IMWG in the near future. I plan to make this a non-negotiable plan with my doctor starting now!

A special kind of session has been added to ASH, the Health Equity Studio Program, to address Diversity, Equity and Inclusion (DEI) in the healthcare field. The presenter talked about the very complicated issues for undocumented immigrants and mixed-status families. I’m proud to live in a state (MN) that has passed a law allowing undocumented immigrants to enroll in MinnesotaCare. Some states deport ill patients to other countries where they may not get the care they need. Philadelphia has outlawed this practice, showing that change can happen on the local level.

For newly diagnosed patients there are many choices and many questions. Dr. Shaji Kumar says that while four drugs (quads) show improved PFS, a patient’s frailty and tolerance may affect the choice. Drug maintenance with Revlimid (lenalidomide) and dexamethasone (len/Dex) is recommended, yet it is better if both drugs’ doses are reduced.

A presentation about transplantation says that it’s still preferable to chemo alone. I can’t help but wonder when it will be phased out in preference for BsAbs and CAR T.

We all know what MGUS is, but I learned about 2 new ones, MGCS and MGRS, clinical significance, and renal significance.

First Full Day at ASH, and My Brain Is Full!

First Full Day at ASH, and My Brain Is Full!

We started our day at 5:30 am by hopping on a shuttle to head over to the International Myeloma Working Group Breakfast sponsored by the IMF.  I must say it was an extraordinary experience to be in the room with all the top Myeloma Doctors, listening to their research (which I can’t tell you about or I’d have to kill you…not really, that’s from a movie…but I can’t tell you)!  What I can tell you is that this is a VERY dedicated group of physicians, and they are working hard to advance treatment in multiple myeloma (MM) for us all. We are in VERY GOOD hands! I’ve listened to so many of these specialists in webinars that I felt like I knew them! I had to remind myself that I indeed did not know them, but I thanked whomever I did talk to for the work they do! Some pretty exciting stuff in the pipeline: some of it will be reported on in the coming days, so I’ll try to get that to you all.

As for reporting on the actual conference today, I am going to leave that to a future blog so I can do it justice—but here are some key takeaways:

  • Darzalex (daratumumab) is awesome, and treating the newly diagnosed with quadruplets is the way to go!
  • Twenty-four-hour urine collections are very useful in initial screening, but they may not be necessary in later assessments.
  • There were a few abstracts speaking to quicker assessments in relapse, which one would hope will translate into quicker treatment of the patient.
  • There was an interesting abstract on the Influenza vaccine; it might benefit MM patients to do a three-dose series rather than the one vaccine, especially if you are on a CD38 monoclonal antibody like Darzalex (daratumumab).
  • IVIG (Intravenous immunoglobulin) reduces infections in patients treated with BCMA (B-cell maturation antigen) bispecific antibodies.
  • There were a few abstracts on minimal residual disease (MRD) testing, but I’ll write more on that next time!
  • And, the last abstract talked about measuring serum BCMA levels in non-secretory disease to monitor for disease progression—it showed some promising results.

That’s my abridged synopsis of day one. Please read this understanding that I am a myeloma patient telling you what I personally understood from all I listened to. I’ll write in a little more detail in the coming days. All in all, a GREAT experience and very heartening and comforting to see all that is being done to enhance the treatment of multiple myeloma patients!

One word: H O P E !!!

@TerryGlassman