How Could Clinical Trials Fit Into Your Myeloma Treatment Plan?

How Could Clinical Trials Fit Into Your Myeloma Treatment Plan? from Patient Empowerment Network on Vimeo.

Considering a clinical trial? Dr. Omar Nadeem, a myeloma specialist, shares advice for talking to your doctor about trials, including key questions to ask your physician about proposed treatments.

Dr. Omar Nadeem is the Clinical Director of Myeloma Cellular Therapies Program and Director of Myeloma and Plasma Cell Pathways at the Dana-Farber Cancer Institute. Learn more about Dr. Nadeem, here.

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Myeloma Treatment: When Should a Clinical Trial Be Considered? 


Transcript:

Katherine:

As ASH comes to a close, it’s always important to remember that these research advances wouldn’t be possible without patients participating in clinical trials. So, for patients who may be thinking about a clinical trial, when should they consider a trial and what should they be asking their doctor about?

Dr. Nadeem:

Those are great questions and very relevant questions. I think clinical trials come in many baskets. They come in the trials I just described, which are looking at established combinations and then looking to see if the addition of another agent, which is FDA approved, could lead to better results. So, those are some examples of trials where you’re trying to really advance the field by using what we already have available and studying it in either different phases of myeloma therapy or in different combinations.

Those types of trials, I think, are always very important and useful, and from a patient perspective, it should alleviate that anxiety of going on to a study that doesn’t have a track record, per se. And a lot of those trials are done in the newly diagnosed, or the first relapse setting, etcetera.

When you’ve had multiple relapses, though, we know that the disease is still not curable. So, you start to see the benefit of each treatment become shorter and shorter as patients go through their myeloma therapy, and that’s where some of these newer, exciting – especially immunotherapy drugs that are currently under study really, really are promising.

So, I think from a patient perspective, a lot of times that discussion – you’re looking at an agent that’s approved but they might not have the efficacy that we’re seeing in some of the studies.

And I think you have to discuss with your physician at that time to see whatever the clinical trial that we’re discussing or thinking about for a particular patient, what is different about it? Why is it something that they would be thinking about for their individual case? Then really, what is the expectation?

I think what we’re seeing now with all these updated results is that some of these response rates, for example, with bispecific antibodies, which is a form of immunotherapy that we’re studying quite a bit in myeloma, they look twice as good if not three times as good as some of these single agent drugs that were FDA-approved.

So, even though you might want to get the true and tested that’s been studied and cleared, the results that we’re seeing with some of these studies are so much better. So, that’s how the field moves forward. So, I think the discussion with your primary physician is key to see which particular trial, is one available, and two, what they think might be best for that particular situation.

The Latest in Myeloma Research: Updates from ASH 2021

The Latest in Myeloma Research: Updates from ASH 2021 from Patient Empowerment Network on Vimeo.

Myeloma specialist, Dr. Omar Nadeem, shares promising research advances in myeloma from the 2021 American Society of Hematology (ASH) annual meeting. Dr. Nadeem discusses the future of personalized medicine for myeloma, as well as positive results from a clinical study on quadruplet therapy.

Dr. Omar Nadeem is the Clinical Director of Myeloma Cellular Therapies Program and Director of Myeloma and Plasma Cell Pathways at the Dana-Farber Cancer Institute. Learn more about Dr. Nadeem, here.

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Transcript:

Katherine:

Personalized medicine for myeloma is slowly becoming more of a reality for patients. Can you provide an update in testing in myeloma? Are there specific markers that you’re looking for when considering patient care?

Dr. Nadeem:

So in multiple myeloma, right now the only targeted therapy that’s in development is looking at venetoclax (Venclexta), and that’s in patients that have the t(11;14) translocation.

So, this has been studied for a while, both as single agent and in combinations and the big BELLINI study, which is looking at it in combination with bortezomib (Velcade) and dexamethasone (Decadron), really has had a lot of buzz over the last few years because there was a toxicity signal with the venetoclax arm.

But now with, again, updated results, etcetera, you’re starting to look to see which are the patients that benefited and which are the patients that didn’t.

And it’s becoming very, very clear that patients that have the t(11;14) translocation tend to benefit tremendously with the combination of venetoclax and bortezomib and dexamethasone. It’s really the patients that don’t have t(11;14) or high BCL2 expression, which is something that they’re also studying, those are the patients that didn’t benefit.

So, really fine tuning that to that particular population and using a combination like that is, I think, an example of where things are headed in myeloma. However, outside of that right now with where things stand, we don’t have targeted therapy to that extent beyond that.

Katherine:

Dr. Nadeem, with the ASH meeting closing out 2021, what are you excited about in myeloma research right now?

Dr. Nadeem:

We’re seeing very impressive results with using quadruplet therapies for newly diagnosed multiple myeloma patents. So, they get a combination of a CD38 monoclonal antibody like daratumamab (Darzalex), and then combining it with our typical agents. So immunomodulatory, drugs, proteasome inhibitors, and steroids. So, an update at this meeting with the phase-2 GRIFFIN trial, which was presented by my colleague Dr. Jacob Laubach, basically giving an update after 24 months of maintenance therapy.

This trial looked at a combination of dara plus RVD, which is lenalidomide, bortezomib, and dexamethasone, with transplant and maintenance, for patients with newly diagnosed myeloma. And what we’ve seen with each update of this study, that the response rates with the quadruplets are significantly better with the triplet. And more notably, we’re seeing very high rates of minimal residual disease negativity in favor of the quadruplet, which usually translates into a greater prognosis for patients.

So, median PFS is still not reached for this particular study, but you can start to see now that the curves are starting to separate and hopefully with longer follow up, we’ll see even a clearer result showing that patients that receive a quadruplet therapy at the newly diagnosed phase of their myeloma therapy benefit tremendously. So, this was a really important update at ASH this year.

Updates in CAR T-Cell Therapy for Myeloma from ASH 2021

Updates in CAR T-Cell Therapy for Myeloma from ASH 2021 from Patient Empowerment Network on Vimeo.

Myeloma specialist, Dr. Omar Nadeem, shares the latest updates in CAR T-cell therapy from the 2021 American Society of Hematology (ASH) annual meeting. Dr. Nadeem discusses long-term study results and optimism for the future of CAR T-cell therapy.

Dr. Omar Nadeem is the Clinical Director of Myeloma Cellular Therapies Program and Director of Myeloma and Plasma Cell Pathways at the Dana-Farber Cancer Institute. Learn more about Dr. Nadeem, here.

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An Expert’s Hopeful Outlook on Myeloma Research and Treatment 


Transcript:

Dr. Nadeem:

My name is Omar Nadeem, and I’m at the Dana Farber Cancer Institute in Boston, Massachusetts. I’m an instructor of medicine at Harvard Medical School, and I direct the myeloma cellular therapies program at Dana Farber.

Katherine:

Dr. Nadeem, you’ve joined us from the American Society of Hematology Meeting in Atlanta. Can you share any highlights in myeloma from the meeting?

Dr. Nadeem:

Yeah, it’s a very exciting time in myeloma therapeutics. We’re seeing a lot of new agents that are being reported at this meeting, showing very promising results.

Then we’re also fine tuning the way we treat myeloma patients by looking at different combinations in all lines of therapy, whether it be front-line or relapsed setting, to try to really understand which treatments are the best and then also more importantly, which treatments do we need to continue patients on, etcetera as they’re going through their myeloma journey. So, lots of updates with important trials at this meeting so far.

Katherine:

We’re hearing a lot about the promise of CAR T-cell therapy. Is there any research news in CAR T-cell for myeloma treatment?

Dr. Nadeem:

Yeah. So, we’ll have a presentation later today, actually, updated results of the CARTITUDE-1 study, which is looking at cilta-cel, which is an anti-BCMA directed CAR-T cell product.

And this trial is a phase-1/2 study looking at some patients with relapse in refractory multiple myeloma that has been reported previously to have a very, very high response rate and very high rates of MRD negativity.

So at this meeting, with just longer follow-up, which is what we’re looking for in terms of how long these responses last, we’re starting to see that the median duration of response is now almost 22 months, which is very impressive looking at the data and comparing it to some of the other CAR-T products that are either under study or the one that’s currently approved.

So, that looks very promising. And also notably, we had some concerns initially about toxicity with this particular product. But that really hasn’t been seen with longer follow-up. So, we’re not seeing a toxicity signal, particularly as it relates to neurological toxicity, with the longer follow-up. So, that presentation will be later today. We look forward to seeing the updates, but so far this looks very encouraging and this is what we anticipate to be the next product that’s available in the market for myeloma.

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An Expert’s Hopeful Outlook on Myeloma Research and Treatment

An Expert’s Hopeful Outlook on Myeloma Research and Treatment from Patient Empowerment Network on Vimeo.

Myeloma expert Dr. Nina Shah shares why she’s hopeful about research and treatment, including immunotherapy and CAR T-cell therapy.

Dr. Nina Shah is Associate Professor of Medicine in the Department of Medicine at the University of California San Francisco (UCSF) and treats patients at the Hematology and Blood and Marrow Transplant Clinic at UCSF Helen Diller Family Comprehensive Cancer Center. Learn more about Dr. Shah, here.

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Transcript:

Katherine Banwell:

Is there emerging myeloma research that you feel patients should know about? And what are you excited about?

Dr. Shah:

There are so many aspects of myeloma treatment and the patient’s journey that we have been looking at. One of the things that I’m most excited about and I do a lot of research in is immunotherapy, which includes both CAR T-cell therapy as well as natural killer cell therapy and bispecific T-cell engager and other novel immunotherapies.

And I think these are interesting, because they allow for the patient’s own immune system sometimes to be used to kill the myeloma. And that’s something that is spring-boarding the way we treat myeloma to give patients better outcomes with less toxicity, if you can believe that. So, we’re really excited about that.

The other thing I’m really excited about is patient experience research that we’re doing. We now know that multiple myeloma patients live for maybe over a decade, and those patients are on a marathon of treatment; and how that treatment is a part of their life is very important in their experience as a patient. So, we’re trying to make that easier for patients as they go through, for example, transplants or maybe immunotherapy to give them more information, more control and more ability to talk about their symptoms with their provider and their care team.

An Expert Reflects on Hopeful Advances in Myeloma Treatment

An Expert Reflects on Hopeful Advances in Myeloma Treatment from Patient Empowerment Network on Vimeo.

Research is advancing quickly in myeloma. Donna Catamero, a nurse practitioner specializing in myeloma, shares why she is optimistic about the future of myeloma care and treatment.

Donna Catamero is Associate Director of Myeloma Translational Research at Icahn School of Medicine at Mount Sinai Hospital in New York City.

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Transcript:

Katherine:

When it comes to myeloma research and emerging treatment options, what are you excited about specifically?

Donna:

So, I’m very excited about CAR T therapies, bispecific therapies and even trispecific therapies. And this is really harvesting a patient’s immune system to attack the myeloma cell. And I’m really excited about the results we’re seeing in the clinical trials. We’re seeing for a single agent therapy – and most patients know that with myeloma therapies they’re on combination therapies, but what we’re seeing is, with a single drug, that we can achieve very, very deep responses and very durable remission. So, patients who’ve had several relapses and are on their eighth, ninth, 10th line of therapy – we’re now able to achieve deep and durable remissions, which even five years ago was almost unheard of. So, this is really a very exciting time in myeloma research. 

Multiple Myeloma: Thomas’s Clinical Trial Profile

Multiple Myeloma: Thomas’s Clinical Trial Profile from Patient Empowerment Network on Vimeo.

 At the age of 34, Thomas was diagnosed with multiple myeloma. After multiple treatments, including an autologous stem cell transplant, Thomas shares why it’s critical to increase participation in clinical trials so we can understand why multiple myeloma poses a greater risk to certain populations. In Thomas’ own words, “Participating in clinical trials is contributing to research for tomorrow’s medicines, and an opportunity to make a difference for myself and for others facing multiple myeloma.”

2021-08-17_thomasIllustration_v2 (1)

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Transcript:

Thomas: 

My name is Thomas, and this is my multiple myeloma story. At age 34, I was healthy and enjoying life. I went to the gym daily, and when I wasn’t working out, I was shooting hoops with my friends.  

During a workout, I suddenly felt excruciating pain in my left shoulder. My family physician declared I had bursitis, but I was so young and in such good physical shape, I knew by instinct that the diagnosis was wrong. I made an appointment with a sports medicine doctor, who ran CT and MRI scans of my upper body. The result wasn’t good. I was diagnosed with multiple myeloma, a cancerous tumor of plasma cells in my left scapula.  

Because the myeloma was localized to my shoulder, my oncologist recommended 6 weeks of radiation therapy. 10 months after the treatment, the agonizing pain returned, but this time in my lower back. The pain was so intense, I remember lying on the floor, unable to move. My myeloma has spread to my lower backbone and right ribs. This time, I received an autologous stem cell transplant, but after 2 months, I relapsed again.  

Still determined, I agreed to participate in a clinical trial to receive an allogeneic stem cell transplant using human leukocyte antigen (HLA)-matched donor cells from my brother Earnest. This time, I lived cancer-free for two years before relapsing. To keep the cancer from progressing, I joined another clinical trial to receive a second allogeneic transplant using my brother’s donor cells. This aggressive treatment also included an intensive conditioning regimen of high-dose chemotherapy plus total-body irradiation. Although the therapeutic effects were serious and kept me hospitalized for 127 days, the transplant was successful and pushed back my cancer for another two years.  

Since then, my cancer has relapsed multiple times, but I refuse to accept defeat. Although my cancer is unlikely to be curable, my current treatment has been successful at keeping the myeloma from advancing. I’m hopeful that I can live a long life while treating it as a chronic disease.  I want to share my story as a Black person with multiple myeloma to raise awareness of this rare cancer. African Americans are twice as likely to develop multiple myeloma compared to whites, and are also more likely to be diagnosed at a younger age1.  

It’s critical we increase the participation of Black people in clinical trials so we can understand why multiple myeloma poses a greater risk for Black people, and get closer to a cure.  Participating in clinical trials is contributing to research for tomorrow’s medicines, and an opportunity to make a difference for myself and for others facing multiple myeloma. 

Myeloma Research: What’s the Latest Treatment News?

Myeloma Research: What’s the Latest Treatment News? from Patient Empowerment Network on Vimeo.

Myeloma expert Dr. Rafael Fonseca shares updates from recent conferences and provides tips to help you stay up-to-date on myeloma research developments.

Dr. Rafael Fonseca is the interim director of Mayo Clinic Cancer Center and serves as the director for Innovation and Transformational Relationships at Mayo Clinic in Arizona. Learn more about Dr. Fonseca here.

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Transcript:

Katherine:

Dr. Fonseca, have there been any recent developments in myeloma treatment in research that make you hopeful?

Dr. Fonseca:

Absolutely. I would say that the one area of work that makes me most hopeful is what we’re seeing with immunotherapy. We have seen that both as the ASH meeting, as well as the ASCO meeting in this year, where people are presenting updates with the various clinical trials with either bi-specific antibodies or CAR T-cell therapy as a new avenue for the treatment of myeloma.

In fact, at the last ASH meeting, we had 14 presentations of different compounds or different constructs that are active.

I think the future is bright in that regard. We’re seeing their application right now. A lot of these updates have also been made at ASCO.

We’re seeing the update of the treatment of treatments with fairly advanced and aggressive disease where we can still show very significant responses. I participate in some of these trials. I can tell you in my institution, using some of the bi-specifics, I see patients who have previously exhausted all of their options and now are MRD-negative at 10 to the -6.

If we’re seeing that in the very advanced disease, I cannot wait to see what happens when we start using these treatments in either early relapse and why not in the near future as frontline part of our therapy? I think to me, that whole field of T-cell engagers, where there’s bi-specifics or the CAR T cells remains one of the most exciting areas for future research.

Katherine:

How can patients stay up to date on information like this?

Dr. Fonseca:

I think what we alluded to before is very important to work with groups like yours and other patient support organizations that can keep them up to date. I think they’re doing a very good job at also providing updates post some of the large meetings. I know there’s a lot of patients out there that are very sophisticated that will even join the medical meetings. That happens with some frequency; that they want to learn, and patients that go and ask me details about the statistics of the trial. That’s a whole spectrum, right?

But at the minimum, I would say a strong connection with a support group, or a patient support organization becomes an imperative as you deal with

this. Also, that would help you because with this whole concept of the information not always being complete and truthful, that can be scary as well, too.

If someone goes and just looks for, I would say even some of the resources that are out there in a textbook today, just keep in mind that textbook was probably written five years ago, and it represents the studies of about 10 or 15 years ago. How that relates to you, it’s very distant. So, it is because of this continuous process of research that we know better what’s going on at the present time.

How Will I Know If My Myeloma Treatment Is Working?

How Will I Know If My Myeloma Treatment Is Working? from Patient Empowerment Network on Vimeo.

How do multiple myeloma experts determine if treatment is working? Expert Dr. Rafael Fonseca explains factors that are examined when assessing treatment effectiveness and why it’s important for patients to speak up about side effects. 

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Transcript:

Katherine:

Once on therapy, how is the disease monitored, and how do you know if the treatment is working?

Dr. Fonseca:

Well, fortunately, we use the same markers. Once a person is in therapy, we will be monitoring. We monitor at least on a monthly basis of those myeloma protein markers. Once a person reaches a great level of response, sometimes we complement that with an analysis of the bone marrow. Of course, it’s more invasive, so we don’t like to do a lot of them, but we do them as needed. As we go forward and monitor patients, we will be looking for signs that those proteins remain in a low level as stable as an indicator that the disease is under control.

Now, if I saw someone and then I start seeing that there’s an increased concentration of those proteins or we see something else clinical, we might need to do a little bit of a regrouping and test again in great detail to determine if the person is experiencing regrowth and the disease is so-called relapsed.

Katherine:

Why is it so important for patients to speak up when it comes to symptoms or treatment side effects?

Dr. Fonseca:

Well, that’s a great question. If you don’t speak about them, we don’t know about them. It seems very obvious, but then we cannot make the proper adjustments. I’ll give you a couple of examples. I already talked about dexamethasone, but a common drug we use is something called bortezomib. Bortezomib is a proteasome inhibitor.

That’s a mouthful, but it’s one of the key type of drugs we use. It’s given as an injection under the skin. Not to be confused, by the way, with daratumumab. Faspro is the name of that medication, so not to be confused with that is bortezomib, which we have been using for many years.

Bortezomib has a potential toxicity that is called peripheral neuropathy. If patients have peripheral neuropathy, that can go from very mild where you have some numbness and tingling, to the more extreme cases that it’s associated with pain, discomfort, even weakness and disability.

Well, if we don’t know that’s happening, then we can’t react to it and we can’t adjust doses or switch to something different altogether. You can imagine now we have more options, but in the old days, I always tell patients, “You might be tempted not to say anything about this because you might be thinking, boy, this is working. I don’t want to interfere with my treatment. I can live with the peripheral neuropathy.” But if it gets worse, despite the fact that the treatment is working, the person might have a very significant impingement on their quality of life.

More so now that we have so many alternatives, it’s important not to get us into a path that we might reach a point of an irreversible chronic complication from treatment.

What Can Newly Diagnosed Myeloma Patients Expect When Starting Treatment?

What Can Newly Diagnosed Myeloma Patients Expect When Starting Treatment? from Patient Empowerment Network on Vimeo.

As a newly diagnosed multiple myeloma patient, the thought of treatment can be overwhelming. Expert Dr. Rafael Fonseca shares insight about expectations when starting a new treatment, and what goals providers have in mind for patient care.

Dr. Rafael Fonseca is the interim director of Mayo Clinic Cancer Center and serves as the director for Innovation and Transformational Relationships at Mayo Clinic in Arizona. Learn more about Dr. Fonseca here.

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Transcript:

Katherine:

Dr. Fonseca, we have a question from a newly diagnosed myeloma patient. Barbara says, “I am just about to begin my first myeloma treatment. What can I expect?”

Dr. Fonseca:

I think if you start on treatment, first of all I hope they already went through a good description of what the treatments are, the frequency by which you’re going to have to go to the center, and also what are the toxicities to look out for.

One of the most common toxicities that we face and one of the most challenging parts of initial treatment is the use of steroids. So, we use dexamethasone as part of every single regimen we use for myeloma. I tell patients, “Dexamethasone is a simple drug at first glance, but it’s oftentimes the most complicated part of treatment.”

The human brain works at triple speed when you’re on dexamethasone. So, it’s hard to sometimes be able to sleep properly. People can become anxious and even the sweetest person in the world can become a little bit edgy on dexamethasone.

I always say Mother Teresa on dexamethasone would be an edgy person. Just be patient. Work with the team. Just know that on the other side of treatment there is a return to normal life.

Our goal as we embark on treatments and, for instance, is I see patients that are going to go through transplant, I tell them, “Our goal is you finish, you recover, and you go back to your life. You back to work. You go back to your family, your kids, your sports.” That’s really what we strive for when we treat patients with myeloma.

What Key Questions Should Myeloma Patients Ask About Treatment?

What Key Questions Should Myeloma Patients Ask About Treatment? from Patient Empowerment Network on Vimeo.

Myeloma expert Dr. Rafael Fonseca shares specific questions that patients should ask about their treatment plan, and explains how to ensure optimal care for specific myeloma subtypes.

Dr. Rafael Fonseca is the interim director of Mayo Clinic Cancer Center and serves as the director for Innovation and Transformational Relationships at Mayo Clinic in Arizona. Learn more about Dr. Fonseca here.

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Transcript:

Katherine:

What sort of questions should patients consider asking about their treatment plan?

Dr. Fonseca:

I think it’s important that patients understand a few things. They can be described in multiple ways. Number one is, of course, what? What is it that is being used? I think that includes a description of what to expect, the practicalities, the names of the medications, their side effect profile, and what to report when you use those medicines. I think that’s very important because if you’re empowered with that information, you’re going to be better off as you react for symptoms that may come along. I always tell patients when you have a cancer diagnosis, your self-awareness goes through the roof because we’re going to be paying attention to everything, every skin change, every pain we have.

So, I think having a bit of that proactive discussion becomes important as they think about the treatments that they want. I think the how-to on the practicalities are very important. The best where the nursing team and the pharmacists help us a lot too. Do you take the medicines at night? Do you take them with meals? Is there something that you shouldn’t be mixing? How much time would it take for me to get a refill? It’s different to get a medication from a specialty pharmacy versus your down-the-street Walgreens. So, all of those things are important that patients, again, participate in the understanding.

If not them, at least the caregivers that are a part of this team. I think it’s important that patients ask also some brief descriptions of (A) the biology of the disease. If I have myeloma, what type of myeloma do I have? Does that matter as far as what treatments I’m going to be using? What treatment options may be available to me because of my specific subtype? We have subsets of myeloma that have options that are not available to others.

Also, I think it’s important that patients also ask a sense from the physicians as to where they are. I’d like to describe this a little bit more. Sometimes, patients ask us specific questions about, am I in a complete response? Am I in a very good partial response? What is a PFS? Those terms work very well when we talk about clinical trials, but they don’t necessarily describe in a great way the situation for an individual patient. I’d use a lot more objectives than I’d use technical terms when I describe where patients are. I say, “You have an excellent response. You have a very deep response.”

Then I’d provide more details if they want. “Yes, you’re MRD-negative at 10 to the -6.” But sometimes I find that it’s harder for patients to understand where they are if they completely focus on the staging system or the response criteria, etc.

Because maybe a VGPR, a very good partial response, doesn’t sound very good.

But then you can be in a very good partial response for 15 years and it doesn’t matter. You my want to be in an MRD-negative status, but you still have a good outcome. That’s why the general description of the status by a physician becomes important.

Katherine:

Do you think patients should get a second opinion consult with a specialist?

Dr. Fonseca:

In general, my answer is going to be yes. This is not self-serving. I think myeloma has become so complex that trying to integrate at least once, or if not, in some infrequent basis, an opinion of a myeloma specialist becomes important. This is no one’s fault. If you’re a community oncologist somewhere where myeloma represents only a small fraction of your practice, I can guarantee you, you cannot stay on top of the literature. I cannot stay up with everything that goes on with myeloma, even though that’s what I do 100 percent of the time.

I get an email every week with all the articles, all the publications, and I have to integrate that. I have to think, okay, does this matter or not? I go to the professional meetings. I see all the abstracts and I still feel like I’m missing out. How could you do that if that is only a small fraction of your practice? I’m sure that the same applies for other cancers, breast and colon. You can’t move. You cannot uproot yourself and leave your community and your family, but I think there should be ways by which patients at least have an opinion from someone who has more expertise. Fortunately, there are many centers across the nation now that have that expertise for the management of myeloma.

Myeloma Test Results and Factors That Impact Treatment Decisions

Myeloma Test Results and Factors That Impact Treatment Decisions from Patient Empowerment Network on Vimeo.

Myeloma expert Dr. Rafael Fonseca reviews considerations that impact treatment choices, including the role of test results and how quality of life can factor in when choosing therapy.

Dr. Rafael Fonseca is the interim director of Mayo Clinic Cancer Center and serves as the director for Innovation and Transformational Relationships at Mayo Clinic in Arizona. Learn more about Dr. Fonseca here.

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Transcript:

Katherine:

What other factors do you consider when determining a treatment approach?

Dr. Fonseca:

The human experience that comes to the bedside as we consider treatments is so multi-factorial and multi-complex that all that needs to be brought into consideration. Whenever I walk into the room, I tell residents usually the medical part can be resolved pretty quick, but we’re reading how much we can communicate? What’s the level of understanding? What do I understand about the support system for this person? Is there someone who can drive to the treatment center? Is there someone perhaps whose other medical conditions would create certain challenges in how they’re going to be treated?

This person is telling me they do daily hikes for four miles. Well, that’s different from someone who I see comes into the clinic and has to use a cane. We try to integrate all of that information to make the right decisions. I’ve made a lot of my career in the early years working and showing how, for instance, genetic factors are important. I’ve come to realize later in my career and through some of the very elegant work that other colleagues have done, that these factors are just as important in determining the ultimate outcome of patients. Whenever I talk about that clinical experience, there’s two things I always tell the residents.

I use the residents a lot because I think it’s a good example of how we aspire to interact with patients. Number one is every single encounter is a final exam. You have to put your best foot forward. Every single encounter should be considered a final exam. Number two is when I walk into that room, there are three things I do, particularly the first time I meet a person.

Number one is connect, right? We cannot have a conversation and I’m not going to be able to move forward unless we have a human connection and I have gained the trust of the patient and the family members that are there. That’s number one. The second point is decide. That is usually okay, we’re going to do this treatment or that. That is a small part. Most of the time for me, that’s a very small fraction of the time and of the mental energy that I consume. There are cases that are more complicated, but most of the time it’s pretty straightforward. So, it’s connect, decide do very small, and then on the other end is explain.

So, that’s how I can connect. I propose we do this, and then why we are going to do it and what can you expect. If you can do those three things, I think that goes a long way in establishing a fruitful and a productive relationship with a patient and their families.

Katherine:

I would suspect that you also take into consideration the patient’s health, their age, maybe test results, side effects, things like that?

Dr. Fonseca:

Of course. So, we look at the medical record and with the advent, of course, of the electronic record and all the tests that we do, our consideration is quite complex. We have to look at all those factors, and the age, and comorbidities. It’s rare that we would take one factor alone that would trump everything else. We usually have to integrate the information. The same is true when we manage myeloma patients and we’re monitoring their protein levels and their response to treatment. I tell patients, they ask me, “What would you do? What’s the magic number for this or that?”

I say, “It’s a little bit like you’re flying a Cessna plane and you have all these dials in your dashboard, and that’s how we manage the situation is the integration of all of that information.”

Katherine:

Right. Can you help us understand, Dr. Fonseca, how test results may affect treatment options?

Dr. Fonseca:

Sure. Happy to do that. In myeloma, we are very fortunate in that we have, and it’s not the topic for today, but we have the best biomarker that exists for any cancer. That is that we can measure the proteins that are associated with the growth of the cells. We have multiple tests that we can do. We do them in the blood and we do them in the urine. They’re simple tests that have been done for decades now that allow us to monitor how a person is doing with regards to their disease. I use the following analogy. Myeloma cells live inside the bones, as I mentioned, in the bone marrow.

They don’t come out into the blood. So, we cannot measure them. Indirectly, we can measure how many they are and how they are behaving by measuring this protein. I use an analogy of imagine you’re walking in a street, and you see smoke coming out of a building. There are two things you can do. First is you diagnose that there is a fire inside the building, right? We see that with myeloma by measuring these abnormal proteins.

Then as a firefighting team comes on, you can gauge whether they’re making progress or not by the amount of smoke that comes out. That’s exactly what we do when we monitor myeloma. We monitor the M-spike, the serum free light chain, the urinary proteins. That’s how we make those determinations.

At the same time, we do that, we have to look indirectly at the rest of the body. We have to look at the kidney function. We have to look at the blood counts. We have to look at the hemoglobin and the red cell count because that can A) start on the wrong foot because of the myeloma itself, but B) can also suffer as a consequence of our treatment.

It is, again, that idea of having the multiple dials in the dashboard that allow us to reach our practice. We have to be adjusting. So, if we measure the proteins and we’re doing great, but then at the same time we see we’re suffering in blood counts, and we may need to adjust those as we provide supportive treatment. If we don’t see the proteins go down, then that may mean we need to change to a different form of treatment or that the person is unfortunately a refractory or relapsing to something.

So, that’s how we integrate the test results into our management.

What Are the Goals of Myeloma Treatment?

What Are the Goals of Myeloma Treatment? from Patient Empowerment Network on Vimeo.

Choosing a multiple myeloma treatment involves assessing and determining goals. Expert Dr. Rafael Fonseca shares insight about treatment goals and how decisions may be approached for the best care for each patient.

Dr. Rafael Fonseca is the interim director of Mayo Clinic Cancer Center and serves as the director for Innovation and Transformational Relationships at Mayo Clinic in Arizona. Learn more about Dr. Fonseca here.

See More From Engage Myeloma


Related Programs:

How to Make an Informed Myeloma Treatment Decision

What Key Questions Should Myeloma Patients Ask About Treatment?

Myeloma Test Results and Factors That Impact Treatment Decisions


Transcript:

Katherine:

What are the goals of myeloma treatment from a clinical perspective?

Dr. Fonseca:

I’ve been very fortunate, also, to live through this era when we have seen a plethora of studies and new drugs being approved for the treatment of myeloma.

When I first started, I used to say no one wanted to do myeloma because we didn’t have good treatments. People wanted to study leukemia, lymphoma. It just turns out that this is probably one of the most vibrant areas of hematology from a science and from a clinical research perspective, of course. If I see young patients who have multiple myeloma, I have essentially two goals. The first one is to induce the deepest possible response I can do so in a safe manner. I also repeat, “in a safe manner.” But I really have the goal to try to induce the deepest response possible because that has translated and continues to translate, and in many ways proven to be associated with an improvement on their longevity and the time we can control the disease.

And it leads me to second goal, and that is that I firmly believe there is a subset of myeloma patients that are cured from their disease.

Now, this is possible because of the availability of these new treatments. I will only be able to say that in 10 and 15 years from now, when we have monitored patients for a long period of time, and we have been able to see that became true. But by all indicators, we have patients that are living many, many years without the disease coming back. I think that would be important. Now, we have patients that with more advanced age sometimes it’s difficult to propose some of the most intense form of treatments like stem cell transplants.

We don’t do a lot of that in individuals over the age of 72 just because the toll that it takes on a person is very high, and the risks become higher. But still, in that population, providing the best treatment possible becomes a goal because I think more and more, we’re seeing patients in that age category that can start to get close to what normal life expectancy would be. It’s not there. It’s not perfect, but you start to get close. Lastly, if someone asked me, I have that balance between quantity and quality, the good news in myeloma, if you do it right, quantity and quality go hand in hand.

So, effective treatment provides symptom relief and provides durability of responses

How Can Myeloma Patients Take an Active Role in Their Treatment and Care?

How Can Myeloma Patients Take an Active Role in Their Treatment and Care? from Patient Empowerment Network on Vimeo.

Expert Dr. Rafael Fonseca explains shared decision-making, and encourages patients to take an active role in their care and treatment to aid in improved outcomes. 

Dr. Rafael Fonseca is the interim director of Mayo Clinic Cancer Center and serves as the director for Innovation and Transformational Relationships at Mayo Clinic in Arizona. Learn more about Dr. Fonseca here.

See More From Engage Myeloma


Related Programs:

How to Make an Informed Myeloma Treatment Decision

What Are the Goals of Myeloma Treatment?

Myeloma Test Results and Factors That Impact Treatment Decisions


Transcript:

Katherine:

Yeah. Lately, we’ve been hearing this term, “shared decision-making,” which basically means that patients and clinicians collaborate to make healthcare decisions, and it can help patients to take a more active role in their care.

I’d like to get your thoughts, Dr. Fonseca, on how best to make this process work.

Dr. Fonseca:

We are very fortunate to live in this time of medicine, where ultimately, we recognize that the patient is the person expert. It is the patient decisions that should drive what is to be done in a situation. Whenever I interact with patients, I tell them, “Listen, I’m going to be like your counselor. I will provide you with options of what I think is reasonable. I will go to different degrees of effort in trying to convince you one way or another for a particular intervention. But at the end of the day, I only do a good job if I present you with the options and the pros and cons of those various approaches.”

I weave that into my language on every single conversation we have with patients. I think we’re way past the time where a physician would come and say, “This is what you’re going to do,” or “This is what will happen.” My language always includes, “I would recommend this.”

“I think the next best step for you to consider would be X, Y, or Z.” But ultimately, I look at patients and not infrequently at the person next to them, a family member or a close friend, and I say, “You’re the boss and with the person next to you providing additional support, comment, and guidance, we can together reach the best decision of what should proceed.” I think we’re incredibly fortunate because patients have access to sophisticated information, especially patients that have serious conditions such as would be cancer and, in my case, myeloma.

As an example, when I work with general internal medicine residents that work with me learning about hematology, I sometimes tell them, “You’re going to walk into a room. Are you going to be seeing what I say, this is like a tennis match between professionals. Are you going to see the level of questions that patients are going to be asking me? They’re going to be asking me about the latest study that was presented at this meeting and the P value and this and that.”

“I can guarantee you that you would not have the tools to be able to address all those questions, simply because there’s such an in-depth understanding of the disease.” I realize this is not everyone. I’m giving you an extreme example. There are individuals that need additional support, more resources. But just to interact with someone who has such commitment to understand their disease and to help us by that understanding make the right decision makes my job so much more rewarding.

Katherine:

What do you think is the role of a patient then in their care?

Dr. Fonseca:

I think it needs to be … I’m describing in some detail and there’s a lot to unpack there. Of course, patients are dealing with a very serious diagnosis. It’s okay to have periods where they are in a pause moment and they’re reflecting of what their facing, and that they can gather information from close family members.

I think we, as providers and the medical team, need to deliver a message that provides clear options for them as far as what the best next phase of their treatment or their management might be, including observations or supportive care. But the patient ultimately is a person who has to make that decision. I frequently get the question, and this is not surprising, and it happens all the time. A patient tells me, “What would you do if this was a family member?” I always tell them, “I always talk to you as if you were my family member, as if you were my brother, my mother, my father.

So, I try to live deeply to that fiduciary responsibility I have to your well-being. I recognize that there are circumstances, and that’s part of the finesse and the art of medicine, that I have to help a little bit more walk you through that step. Sometimes, it’s just human that one may want to say, I just want to disconnect. Maybe I’m not the person that wants to go and read in detail. But perhaps I have my daughter or my son who are helping me and understand better where things are.”

I think one of the key aspects of my role is to make sure that I have a sense that the person has a good understanding to be able to make an informed decision. At the end of it all, if the person decides to proceed in such way that doesn’t necessarily align with what I’m trying to do, I’m deeply respectful of that choice. I will go to extra lengths. So, if someone is foregoing treatment, when I know their treatment has a high likelihood of improving their quality of life, relieve a symptom, or improve survival, I don’t think I would do a good job if I don’t present why that’s so important. But ultimately, it is the patient’s decision.

Multiple Myeloma: Danielle’s Clinical Trial Profile

Multiple Myeloma: Danielle’s Clinical Trial Profile from Patient Empowerment Network on Vimeo.

Multiple myeloma patient Danielle was a very active person – and even went on vacation – right before receiving her diagnosis. Her myeloma journey unfolded with her myeloma symptoms, diagnosis, treatment, and participation in a life-altering clinical trial. “I decided to do the study trial because I also wanted to help individuals. If it wasn’t going to help me, then my data that they collect from the study trial will definitely help the scientists, researchers, the doctors. It would help them try to find a cure.” 

See More from Patient-to-Patient Diverse Myeloma Clinical Trial Profiles

Transcript:

Danielle:

Hello, everyone. My name is Danielle.

My myeloma story began in 2011. I was experiencing pain in my hip and my back area, and it was the pain that would come and go.  I was also very lethargic in 2011 and couldn’t understand why I was so extremely tired, so I thought the pain in my hip and back area was due to sciatic nerve, and I just didn’t do anything about it, ignored the pain. My husband and I went on our first trip without our sons in October of 2011, and two days before the trip, I developed this really bad nasty pain in my hip and leg area, which actually altered my walk, but I had no idea what the heck was going on, and so I was so frustrated that I… As soon as we got home, I went to see an orthopedic doctor because at that time I was working out like five times a week, so I thought maybe I pulled something, a pinched nerve or something. So I went to see him, he took X-rays, I believe it was an MRI, couldn’t be sure, but when I went back to get my test results, he sat me down and said, “Mrs. Spann, there’s a mass here in your fibula, and I’m going to recommend you to an orthopedic oncologist.” So, that was the very beginning of my diagnosis, initial diagnosis. Of course, I was in denial because I’m like, I knew what an oncologist was, but he must not be talking to the right person, but I went ahead and I met with the orthopedic oncologist. He ran a bunch of tests and mentioned to me that I had myeloma, which is concentrated in one area, which was my fibula, and then he recommended that I have my fibula removed on my right leg. Two days before surgery was scheduled, I received a phone call from his office, saying, “Mrs. Stann, you have lytic lesions all throughout your skeletal structure, and we’re recommending that you go see a bone marrow transplant oncologist.” So now it’s becoming real. The diagnosis is what it was, and I just wanted to know how I could basically fight this. I’m the type of person where you tell me one thing and let’s try to find a solution, so I met with the bone marrow transplant specialist, the oncologist, and then we formulated a plan, and that plan was for me to go on my first study trial. And so that was my introduction into my having multiple myeloma.

I made the decision to participate in a trial, because I trusted my doctor. He had the expertise to understand where my myeloma was, the counts, how aggressive it was, and he recommended that I go on the study trial. He also told me that if the study trial was not going to work for me, or if it wasn’t helping me, that he was going to take me off the study trial. So, I was on the study trial from like January to March…to the end of March, and he sat me down and said that it was not working, my numbers weren’t really moving, and that he was taking me off the study trial. And he took me off the study trial, there were some other treatments that were involved, and then I had two stem cell transplants. After the transplant in 2012, I went ahead and started another treatment regimen, and I was on that for several years, which worked well. My numbers were coming down, but then unfortunately they started going back up, so he mentioned that I should go on another study trial.  I weighed the odds, and I knew that he would not lead me down the wrong path. So, I went ahead and I participated in the study trial that I’m still on today, and I’ve been on it for about three, four years.

I decided to do the study trial because I also wanted to help individuals. If it wasn’t going to help me, then my data that they collect from the study trial will definitely help the scientists, researchers, the doctors. It would help them try to find a cure. And so that’s what I wanted to help in some form or fashion, and when I first was diagnosed going to the Winship Cancer Center twice a week, there was a quote that was posted in the cancer center, and that quote was by Dr. Martin Luther King Jr., the quote read, “Life’s most important and persistent question is, ‘What have we done to help others?’” And I would go into the center and I’m like, “Yeah, what have I done to help others?” And me participating in the study trial, I felt like I’m helping others indirectly, and it wasn’t always just about myself, it was, “Okay, yes, the study trial gives the data, and it’s helping me, but it’s also helping that next person as well.”

So, I always look at my life as before diagnosis and after, and my after does not look like my before, I can’t do the same things, I can’t do the same things that I used to do. And one of those things is going to the mall and being in there like 10 hours, that’s so remedial, but it just goes to show like I cannot exert myself the same type of energy that I could before diagnosis. And again, that’s my new normal.  I stay positive with everything in life, things happen, but you just have to do what you can to make it better, no matter what it is.

I am happy and proud and so grateful and thankful to mention that as of January 2021, my myeloma is 0% detectable, which means there’s no presence of multiple myeloma in my blood, in my urine, nor in my bone marrow. And so I’m still on a study trial, and I have two different chemo meds that I have to take, and I just act accordingly if I know that one of the chemo meds that I have to take twice a week gives me an upset stomach. I just accordingly in finding different ways to push through it. It is what it is, and my motto when I was having my bone marrow transplants was, “This too shall pass.” And so no matter what I’m going through in life, no matter how down I get. This moment will pass. And so tomorrow, you’ll look back on today and say, “You know what, I did it, I made it.” And you’ll do that for the next day, until you realize that you’re just constantly defeating that previous day, and you’re moving forward.

So, I’ve heard the terminology of a clinical trial, never really paid attention to it because I never had to…I had an idea what the clinical trial was. But once it really came home to me, I realized that, in my words, the clinical trial is collecting the data necessary, they’re going to give you the trial medication, because they’re looking to get this, this medicine approved to put on the market. These medications would not get approved by the FDA, acetaminophen (Tylenol) at one point had to go have a study trial and then get approved by the FDA and then can be distributed to the masses. And so it’s the same with these other drugs. We need individuals to participate positively, knowing that if this is not helping me right now, it will help someone in five years, in two years, in 20 years. The advice that I would give is to trust your doctor, your doctor would not recommend a study trial if he felt that there was a medication that’s already on the market that would help you better. If the study trial you’re on is keeping you with your family, and at the same time is…the scientist, the researchers they’re gathering all this data, it could come to be an actual medication in three, five, seven years. And so just think of it as something that you’re helping society…and your fellow…and your fellow man.