Tag Archive for: myeloma clinical trials

Considering Joining a Myeloma Clinical Trial? Questions to Ask Your Healthcare Team.

Considering Joining a Myeloma Clinical Trial? Questions to Ask Your Healthcare Team.  from Patient Empowerment Network on Vimeo.

Considering participation in a clinical trial can bring up a lot of questions. Myeloma expert Dr. Melissa Alsina shares advice and key questions patients should ask their healthcare team before joining a myeloma clinical trial.

Dr. Melissa Alsina is an associate professor of medicine in the Blood and Marrow Transplant Program at Moffitt Cancer Center in Tampa, Florida where she also serves as head of the Multiple Myeloma Transplant Program. Learn more about Dr. Alsina, here.

See More from Myeloma Clinical Trials 201

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Understanding the Role of Clinical Trials As a Myeloma Treatment Option

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Defining the Myeloma Patient Role in Their Care

Defining the Myeloma Patient Role in Their Care

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Myeloma Treatment & Research Updates From 2022 ASCO and EHA Meetings 


Transcript:

Katherine:

When a patient is considering participating in a clinical trial, what sorts of questions should they ask their healthcare team? 

Dr. Alsina:

I think the number one thing is “How can this help me? What is the potential for this treatment?” The other very important thing is “What are the potential side effects? Has this been done before in other patients? Do you have any experience? What do you think are going to be the side effects or additional risk compared to getting the standard of care?” 

And then, I think the third thing is “How much commitment do you need from me?” Because there is no doubt that clinical trials require a lot of commitment. When we are doing a clinical trial, we, for example, have to give all the drugs in the center, usually. Let’s say I’m testing Revlimid (lenalidomide), Velcade (bortezomib), and dexamethasone (Decadron) followed by CAR-T, for example in patients with high-risk myeloma. That’s one of the studies. 

Yeah, you could get Revlimid, Velcade, and dexamethasone anywhere. Those are approved drugs. But if you are participating in a clinical trial, you have to get it at Moffitt or at the center, which means patients traveling back and forth, so that is very important because it requires a lot of commitment from the patients. And I think, on that line also, you can ask as a patient, “Well, what are the resources there in the clinical trial that can help me make that commitment?” 

Frequently, clinical trials help patients by paying for their transportation, their gas, their accommodations if they have to stay overnight, to be able to comply and meet all those different visits.  

Understanding the Role of Clinical Trials As a Myeloma Treatment Option

Understanding the Role of Clinical Trials As a Myeloma Treatment Option from Patient Empowerment Network on Vimeo.

When it comes to myeloma treatment options, where do clinical trials fit in? Dr. Melissa Alsina of Moffitt Cancer Center discusses the role of clinical trials in a myeloma treatment plan at every stage of a patient’s care.

Dr. Melissa Alsina is an associate professor of medicine in the Blood and Marrow Transplant Program at Moffitt Cancer Center in Tampa, Florida where she also serves as head of the Multiple Myeloma Transplant Program. Learn more about Dr. Alsina, here.

See More from Myeloma Clinical Trials 201

Related Programs:

 
Considering Joining a Myeloma Clinical Trial? Questions to Ask Your Healthcare Team.

Considering Joining a Myeloma Clinical Trial? Questions to Ask Your Healthcare Team.

Is It Too Late for a Myeloma Second Opinion?

Is It Too Late for a Myeloma Second Opinion?

Myeloma Treatment & Research Updates From 2022 ASCO and EHA Meetings

Myeloma Treatment & Research Updates From 2022 ASCO and EHA Meetings 


Transcript:

Katherine:

When it comes to myeloma treatment options, where do clinical trials fit in? 

Dr. Alsina:

They fit everywhere, essentially. They fit everywhere because myeloma – even though we have many, many advances, it’s a disease that we cannot cure, so there’s still a lot, a lot of work to do, so we have trials for newly diagnosed patients, improving what we do at newly diagnosed, bringing in some of those therapies, for example, like CAR-T up front, and then we have trials for early relapse/late relapse, because again, yeah, we’ve done a lot and we feel very encouraged by that, but we’re short because we have not been able to cure myeloma. 

So, it’s super important, and it’s super important that patients reach out to myeloma centers to see what is available for them because participating in a clinical trial, number one, gives a patient a unique opportunity to get something more than standard of care, something that might make their response better or their survival better.  

That’s one thing, and the other thing is the only way we’re able to move the field forward is doing clinical trials and having patients participating in clinical trials, and the reason today I can sit here and tell you that the treatment of myeloma has evolved dramatically in the last 20 years, and now we have these responses that are amazing that were unheard of, is thanks to the many patients that have participated in clinical trials. 

Without that, obviously, we would not be here with these results. But that needs to continue. I think we cannot rest because there are still patients that die from myeloma. We cannot lose the perspective that this is still an incurable disease and there’s still a lot of work to do, and the only way to get there is to continue doing the research. 

Katherine:

It sounds like clinical trials are also available for patients who have already been treated with another therapy. Is that right? 

Dr. Alsina:

Absolutely. Clinical trials are available for all the different stages of the disease – when you are newly diagnosed, when you have your first relapse, when you have your second relapse.  

Katherine:

Anytime through the process. 

Dr. Alsina:

Anytime, anytime, and there are clinical trials – the clinical trials not only help us test new drugs or new combinations of drugs, but it also helped us understand the disease better. The majority of clinical trials, we do what we call correlative studies, where we get a sample of the patient, the bone marrow of the patient, for example, before and after therapy, and we see what are the changes that we see there and what are the genes that dictate that response or lack of response. 

So, clinical trials not only help us improve outcomes in patients, but it also helps us understand the disease better that leads to other new therapies and other clinical advances. This can translate into new clinical advances 

Why Is Multiple Myeloma Diagnosed Much Later in BIPOC Patients?

Why is Multiple Myeloma Diagnosed Much Later in BIPOC Patients? from Patient Empowerment Network on Vimeo

How do multiple myeloma diagnosis and treatment differ in BIPOC communities? Expert Dr. Joseph Mikhael details some statistics on BIPOC myeloma patients, factors that can impact myeloma survival rates, and myeloma clinical trial participation rates of African Americans.

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Will Telemedicine Mitigate Financial Toxicity for Myeloma Patients?

Will Telemedicine Mitigate Financial Toxicity for Myeloma Patients?

How Can We Address Noted Disparities in Multiple Myeloma?

How Can We Address Noted Disparities in Multiple Myeloma?

 

Transcript:

Dr. Joseph Mikhael:

We know that multiple myeloma is a unique disease in the African American, in the Black community, really for many reasons, primarily the disease is twice as common in Blacks than it is in Caucasians, we don’t fully understand all of the rationale and the understanding of that, the science behind that, but we know it’s just twice as prevalent.  What’s perhaps most disturbing is that despite knowing that it is twice as common, it is often not recognized and not recognized in time. The average time to diagnosis from the onset of symptoms to an accurate diagnosis is significantly longer in the African American community than it would be in the Caucasian community, and that’s an unfortunate reality. And that along with the treatment that individuals have access to, we’ve learned, unfortunately, that African Americans are less likely to receive triplet therapies or the combinations of chemotherapy that are so important, transplant that we know is stem cell transplants are very important in the treatment of myeloma, and access to clinical trials. African Americans constitute somewhere between 17 percent to 20 percent of all myeloma patients in this country, but actually, only reflect about 5 percent to 6 percent of clinical trial participation, and all of that has led unfortunately to an inferior survival rate in African Americans compared to Caucasians.

We’ve seen huge advances in survival in myeloma over the last decade, but for every 1.3 years gained by Caucasian patients, we’ve only seen 0.8 years gained in Black patients, so this is a disparity that is disturbing and that we need to address.

The disparity in multiple myeloma is honestly, not only confined to the African American community, we see this in many other vulnerable communities, in particular, the Hispanic community, where we know that the disease is diagnosed at a younger age than we would typically see in the Caucasian community. Also reflective of the healthcare system in our country where many patients of the Hispanic background have less access to healthcare, and this clearly influences outcomes, and so as we study this more and appreciate it more, we come to understand that there are many vulnerable populations by virtue of race, by virtue of insurance status, by virtue of a documented status, all of these things, unfortunately, have a significant impact in a patient’s survival with multiple myeloma. COVID-19 has really affected so many things in the medical community. But thankfully, one of the things that we have not significantly seen, apart from for a period of time, reduced access to clinical trials, we have been able to maintain the supply of our key agents and treatments that we use in multiple myeloma. So I’m very thankful that I have not had to delay or cancel my patients’ treatments by virtue of a supply chain issue, we’re very grateful that that supply chain has pretty well been maintained after out the pandemic, and we trust will continue to be maintained.

How Will Telemedicine Impact Multiple Myeloma Clinical Trials?

How Will Telemedicine Impact Multiple Myeloma Clinical Trials? from Patient Empowerment Network on Vimeo

What impact has telemedicine had on multiple myeloma clinical trials, and what effect will it have on trials in the future? Expert Dr. Joseph Mikhael explains the impact of telemedicine early on in the COVID-19 pandemic, how he uses virtual visits with his patients currently, and the role and benefits of telehealth in the future of myeloma care.

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Are There Any Barriers for Multiple Myeloma Patients Using Telemedicine?

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Transcript:

Dr. Joseph Mikhael:

COVID-19 has impacted our lives in just about every way imaginable, and in multiple myeloma, sadly has very much impacted our ability to conduct clinical trials. Thankfully, now that we are out of the immediate acute phase when many trials were suspended, we actually have been able to work around this in general, where now we’ve been able to re-introduce studies and bring in new studies, of course, and we can do so in a more careful manner. Many of our clinical trials now are allowing intermittently to have telemedicine visits, which reduces the traffic for patients and makes it a little bit smoother. Some of the questionnaires and the things that we used to have to fill out on paper or physically in-person now can be done electronically, and so I think in many respects, we’ve really overcome most of the barriers so that we can continue the outstanding work and clinical trials to provide options for our patients that were not available before.

And looking to the future, I hope, even paradoxically in some way that this may — now that we’ve developed a more sophisticated telemedicine platform — it may allow us to do more and perhaps reach patients that may not have been reached before, there are already studies and trials that are being done through telemedicine, not necessarily a drug trial but quality of life studies, engagement studies, educational studies, different ways that we can enhance a patient’s experience and investigate better ways of doing things now that we can do so more fully electronically.

So, when I think of telemedicine and the future in multiple myeloma, I think it will continue to have a role in the long term. I think, much like people think that there will be more virtual meetings, I think we all want to get back to in-person meetings of various types and sizes and shapes, there will always be a component of virtual, and I can think even in my own practice and some patients that have quite a long drive to come down to see me, that they will still have to have face-to-face visits, but intermittently when the things are going well, follow-up like visits where the discussion may be limited.

I think there will be a role for this so that we can leverage the best of telemedicine and the best of in-person medicine so that the patients can receive the best care possible.

How Will the Pandemic Impact Multiple Myeloma Trials?

How Will the Pandemic Impact Multiple Myeloma Trials? from Patient Empowerment Network on Vimeo

How has the COVID-19 pandemic changed multiple myeloma clinical trials, and how can telemedicine play a role in trials? Dr. Sarah Holstein shares her perspective on how trials were altered and her suggestions for improvements in trials.

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Will Telemedicine Be a Long-Term Survival Tool for Myeloma Patients?

Is Telemedicine Here to Stay for Multiple Myeloma Care?

Are There Limitations of Telemedicine for Multiple Myeloma Patients?

 

Transcript:

Dr. Sarah Holstein

Early on, I was very concerned about the ability to conduct clinical trials during the pandemic, early on, at least in our institution, and I know that there were many others across the country, there was a lot of concern about really limiting what was considered by the IRB (Institutional Review Board) to be an essential contact. They perhaps placed an emphasis on later phase clinical trials and thought that the earlier phase clinical trials weren’t necessarily proving to be a benefit for patients and therefore shouldn’t be opened, and I would have to say that that was not what my thought was. I really think that all clinical trials, whether it’s a Phase I, Phase II, or Phase III or of utmost importance to our patients and are important for their care. So again, early on, I was very concerned about limiting the access of clinical trials to patients. As the pandemic has continued and it’s become clear that this is going to be life as we know it for unfortunately, quite some time, I know at our institution, we’ve really tried to be as safe as possible, but all clinical trials are open and we’re allowed to enroll, I think there still is room for improvement with respect to how telemedicine is incorporated into clinical trials, and whether or not we can do things like allowing patients to get their study labs drawn closer to home as opposed to traveling to the academic center, so I think there continues to be room for improvement for really trying to minimize the amount of traveling that people do, and therefore the amount of potential exposure that patients have.

We still are not routinely using telemedicine for the clinical trial visits, that most of those are still in person. And I think depending on the specific trial, that is probably appropriate if you have a new agent and a lot of what you’re looking for is evidence of toxicity, I think it is important to be able to evaluate the patients in person and really be able to conduct a normal physical exam, having said that though, if a patient’s on a clinical trial where they’re receiving more standard of care, and perhaps it’s in a maintenance phase of a study, I think being able to utilize telehealth for some of those more routine visits would really be beneficial for both the patients and the healthcare team.