IMF Myeloma Support Groups, Down with Dex Research, and Defining Cure in Myeloma

Scope and Methodology

This article summarizes educational presentations and discussions from Day 1 of the International Myeloma Foundation (IMF) Patient & Family Seminar held in Boca Raton, Florida. The content reflects remarks and perspectives shared by IMF leaders and myeloma experts during the live meeting, including IMF Medical Advisor Dr. Joseph Mikhael and IMF Vice President of Support Groups Robin Tuohy.

The article is intended for informational and educational purposes only and does not constitute medical advice, diagnosis, or treatment recommendations. Clinical data, treatment discussions, and emerging concepts referenced in this coverage are based on expert commentary, published research, ongoing clinical investigations, and presentations discussed during the seminar. Patients should consult their healthcare teams regarding individual treatment decisions, eligibility for therapies, and clinical trial participation.

Key themes covered include myeloma support resources, advances in immunotherapy, evolving approaches to dexamethasone use, and emerging expert discussions surrounding the definition of cure in multiple myeloma.

Key Takeaways

• The IMF now helps facilitate more than 160 myeloma support groups, including specialized communities for high-risk patients, care partners, Spanish speakers, and working-age patients.
• Dr. Joseph Mikhael highlighted the growing role of immunotherapy combinations, including teclistamab plus daratumumab, in earlier lines of myeloma treatment.
• Experts are increasingly advocating for reduced long-term dexamethasone exposure to improve patient quality of life while maintaining treatment effectiveness.
• Emerging discussions on defining cure in multiple myeloma center on sustained MRD negativity, long-term remission, and treatment-free disease control.
• Advances in clinical trials, MRD testing, and immune-based therapies continue to reshape expectations for long-term outcomes in multiple myeloma.
   

Day 1 Highlights: International Myeloma Foundation’s Patient & Family Seminar in Boca Raton, Florida 

After warmly welcoming the attendees, IMF VP of Support Groups Robin Tuohy shared her myeloma journey as a care partner to her spouse, Michael Tuohy, who has been living with myeloma for 26 years.

Robin said, “There is great hope today. Hope and research in what’s happening right now in the field of myeloma.”  

She shared how when the IMF began in 1990, there were only 35 support groups, and today, the organization helps facilitate more than 160 support groups. She introduced attendees to the special interest support groups, such as the Living Well with High-Risk Myeloma Support Group, the MM Care Partner Support Group, Las Voces de Mieloma for Spanish speakers. Living Solo & Strong with Myeloma for patients who do not have care partners, and the new Myeloma in the Middle for those patients who are working at their jobs or managing their busy family lifestyles.

Robin recommended attendees to ask Myelo®, the IMF’s generative-AI chatbot, questions about myeloma, rather than simply searching on Google. She also reminded all to reach out to the IMF InfoLine for valuable information. For those seeking clinical trials, Robin pointed them to the IMF’s Clinical Trials Matching Engine powered by SparkCures at https://myeloma.org/sparkcures.

With the Seminar taking place in March during Myeloma Action Month, attendees were encouraged on how to get involved and take action to raise myeloma awareness.

New FDA Approval in Multiple Myeloma 

IMF Medical Advisor Dr. Joseph Mikhael spoke about the recent FDA approval of teclistamab in combination with daratumumab in the first relapse setting. Dr. Mikhael explained the drug teclistamab’s mechanism as follows:

“A bispecific antibody is a drug that has two arms. It grabs on to the myeloma with one arm, and it grabs on to a local T cell or a cell in your body that as kind of like a soldier cell and engages that T cell to destroy the myeloma. I know that sounds like Star Trek even for some of us, but that's amazing what we can do now.”  

Dr. Mikhael went on to explain how daratumumab works:

“It's a monoclonal antibody that hooks onto myeloma and triggers your immune system to destroy the myeloma. But what's fascinating is when these two [teclistamab and daratumumab] are put together, we see a synergy that we did not see from either individually.”

Dr. Mikhael pointed to the 2025 American Society of Hematology Annual Meeting & Exposition, “where we saw patients who are given this combination [teclistamab + daratumumab]. At three years, 85% of those patients were still in remission. This is in patients who have already been treated once before for their myeloma.”

Following his explanation of this new exciting combination approval in myeloma, Dr. Mikhael dived into immunotherapy:

“Immunotherapy is just a big word for saying we're using your immune system to fight your own cancer. These immunotherapies that we had to wait for people to have multiple lines of therapy to use, we can now use as early as first relapse. And yes, we are doing clinical trials where we're using them even in the frontline.”

‘Down with dex!’ 

The next topic that Dr. Mikhael covered was the question of whether to use dexamethasone with existing myeloma drug combinations. His commentary (co-aurthored with Susan Harding in Blood), “Down with dex!”, as well as the January 2026 publication in the Journal of Clinical Oncology, “Past, Present, and Future of Dexamethasone in Multiple Myeloma and AL Amyloidosis.” both discuss the use of dex in myeloma.

Dr. Mikhael said, “Dexamethasone has properties that fight myeloma directly. It reduces the reaction that we can get to drugs. Dexamethasone can reduce nausea, and dexamethasone can reduce pain. So, it has four things about it that are really quite good.  

“However, after a while, we know that dexamethasone can mess with your mood. It can mess with your sleep. It can increase your blood sugar. It can thin your bones. It can cause more bruising. All sorts of things happen when we have prolonged dexamethasone use. So, what we essentially said in the article was, yes, dexamethasone has value. But now that we're using doublets, triplets, even quadruplets, we'll be talking about quadruplets. And for those of you who are early in the myeloma world, you'll be able to join Doctor Abner tomorrow and talk a little bit about, front line therapy and how we typically use quadruplets.

"We're realizing the benefit that Dex is giving is relatively limited. Yes, it does boost the effect of these other drugs, but its role is limited. For that reason, we really should limit how long we use it—that we should use it for those first couple of cycles and then we’re 'Down with dex!'"  

He concluded this subject with the point, “Despite the fact that we go down on the dosing of dex, it doesn't reduce the efficacy or the benefit of the regimen that someone's on, but it can considerably improve their quality of life.”

Defining Cure in Multiple Myeloma

According to Dr. Mikhael, “I would not say that we have cured multiple myeloma. We have not truly cracked that nut. Although there are some patients who, with very limited treatment, go into very long-term remission, which in some capacity, it's as if they've been cured. We've seen that for years and years, but it has always been a tiny fraction.  

“And I actually think that fraction has grown with these great therapies that we have. But I always want to be careful when we use the word ‘cure,’ because that word has such implications.  

“But a group of experts came together at the recent International Myeloma Society to say, let's define this. If we say we want to achieve a cure, we need to know what that is, right?

“We need to define that finish line. And we haven't formally made that final definition yet, but we're getting closer to it. I wanted to just give you a little sense of what was discussed there, because it's still early. It's not finalized, but it's giving us a feel of how we're going to define cure.  

 “When we think of cure in general, I like to think of cure as what would happen if I walked here down the street somewhere and just asked someone, “Hey, how would you define cure? Not necessarily some fancy scientific definition, but just the average Joe definition, right?

“Someone would probably say something like, ‘Well, you get a little bit of treatment, and you stop treatment. Then, you don't have to think about the disease anymore.’  That's really kind of the that the layman's version of cure, isn't it? But when we design cure trials, as we start to determine if we can say a patient is cured, we want to know what that finish line looks like.”  

Dr. Mikhael summarized his talk with the following:

So again, not finalized. But the key elements to that finish line are a few things.  

A patient has a really, really deep response. Not just partial remission, but minimal residual disease negativity (MRD-). 

In essence, it just means that there's no measurable disease left. I can't find any disease by sophisticated means. We do these sophisticated tests sometimes.  

I've called it the wet Q-Tip test. Right. If you say to me, ‘Oh, look at the floor here at the Marriott in Boca. It's very clean, isn't it?’

And I'm sure it is very clean. Please don't mistake me. It's very clean. But if I really want to know if I got, like, a wet Q-Tip and I go down there and start dipping it between the fibers, am I going to find any dirt? No, I'm not going to find any dirt because it's completely clean.  

Yet, you understand how we're looking for tiny fragments of dirt. Similarly, we do these tests on the bone marrow to look for tiny amounts of myeloma. Like, literally one myeloma cell in 1 million or 10 million cells. That's how sophisticated this test is.  So, number one, someone has to have a deep, deep remission down to negativity.  

The second aspect of cure is MRD negativity must be a sustained response. 

Sadly, we have some patients that get a beautiful response from their treatment. I don't see the disease anymore. But then within a short period of time, the disease comes back. That's a very challenging situation, and I know some of you have experienced that.

Sometimes, we even incorporate that into our thinking of so-called high-risk myeloma, where the disease goes away and comes back quickly, which paradoxically, sometime the disease doesn't fully go away, but it stays away for a really long time.  

 That's the complexity of myeloma. I was just saying to someone earlier, sometimes we find that tiny bit of disease left. Every year, there's a really important meeting in Miami that discusses MRD.

With myeloma, is it Rambo or is it Bambi? Meaning sometimes, the remaining myeloma can be very aggressive. Sometimes, it's actually not that aggressive. Because what matters is, is that it stays there.  

So, we want to get people to MRD-negativity. We want it to stay there. We’re coming to appreciate that. Maybe that timeframe is five years. We want someone to get MRD- for five years.  

The third aspect is how do we really define cure? We want to see people get into MRD negativity. We want them to stay there for five years, and we want them to do it with no treatment, meaning they've stopped treatment and that persists for five years afterwards. 

So, we know we want to treat people.We want to be able to eventually say that a myeloma patient will not have to be treated forever. Some with our treatments now , we have to give them for many years. But wouldn't it be great to say a patient no longer needs treatment and no longer has to think about their myeloma.  

That is the hope of what we have with the future of myeloma and the cure of myeloma, and of course, that has been our mission for so long at the IMF that indeed we need to discover this cure. And we're getting closer and closer to it all the time

Day 1 of the IMF Patient & Family Seminar in Boca Raton, Florida, also covered a Myeloma 101 and The Unseen Impact of Myeloma. The latter will be discussed in an upcoming blog.