Tag Archive for: clinical trial questions

Considering a Myelofibrosis Clinical Trial? Questions You Should Ask

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Considering a Myelofibrosis Clinical Trial? Questions You Should Ask from Patient Empowerment Network on Vimeo.

What questions should patients ask when considering a myelofibrosis clinical trial? Expert Dr. Gabriela Hobbs discusses how clinical trials may fit into a treatment plan and shares key questions to ask your healthcare team about participation.

Dr. Gabriela Hobbs is a hematology-oncology physician specializing in the care of patients with myeloproliferative neoplasms (MPN), chronic myeloid leukemia and leukemia. Dr. Hobbs serves as clinical director of the adult leukemia service at Massachusetts General Hospital. Learn more about Dr. Gaby Hobbs.

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Transcript:

Katherine:

So, where do clinical trials fit into a treatment plan? 

Dr. Hobbs:

So, it really depends on what is available at the site where you’re seeking care. Clinical trials come in a variety of different flavors. So, there may be a clinical trial for patients that are newly diagnosed, that are about to start a JAK inhibitor, for example.   

So, if you’re a patient that’s considering a JAK inhibitor to treat your spleen symptoms or your systemic symptoms, and there happens to be a clinical trial for adding on another medication, like the first JAK inhibitor you receive, well, that’s a great place to consider a clinical trial.  

There may also be clinical trials in later lines. Let’s say you were treated only with a JAK inhibitor first, but the study that’s available at your center is adding another medication to the JAK inhibitor if the JAK inhibitor by itself didn’t quite do the trick. 

There’s also other studies, for example, at the time of transplantation, for example, using the JAK inhibitors during transplant. So, really the clinical trials can be relevant at any time during treatment. In addition to clinical trials, testing new medications, there’s also other ways to participate in research throughout your time as a patient with your care team, which may include things like, for example, consenting to participate in a tissue bank.  

You donate a sample of your blood or bone marrow that is then later on used for research. Or we may have studies investigating the symptoms a patient has throughout their disease or their experience living with their disease. So, there’s many different ways of participating in research and clinical trials, even if those don’t necessarily include trying a new medication.   

Katherine:

What questions should patients be asking if they’re interested in learning more about clinical trials? 

Dr. Hobbs:

Yeah, great question. So, the first is understanding, you know, what is the medication that you will be receiving? Are you going to be receiving a placebo? Is that an option? This means a sugar pill. That’s a common question that I get. How do you get assigned to different groups? So, in one trial, there may be a group that gets one dose, another group that gets another dose, et cetera. So, it’d be important to know how are you going to get assigned and what are the options potentially for you before you sign up.

After that, it’s important to know what phase the study is in. So, is this a first-in-human study where your doctor may not be able to tell you a whole lot about what’s expected in terms of side effects or safety or toxicity? Or is this a Phase III study where maybe the trial has been open for many years and there’s been many patients that have been enrolled in it already? Or maybe this is a drug that’s already been approved for another condition and we’re borrowing it for myelofibrosis, for example, and then your care team can tell you lots of information about the safety and toxicities, etc.  

So, having a sense of where the drug is in its development, I think can be very helpful. Then there are some practical things that we sometimes do not spend enough time talking about.  

So, I’m glad to have the space to talk about that here. Participating in a clinical trial takes time. And it’ll take more time as a patient to participate in a clinical trial than to receive regular care. You may have to go to the hospital where you’re being treated more frequently. If you’re somebody that receives virtual care where some of your visits are telehealth and some of them are in person, you need to be aware that you may have more visits that are in person because the clinical trial procedure requires that certain labs or tests be done in the facility, not anywhere else. Clinical trials by definition, unfortunately, sometimes have to be very inflexible in order to ensure that we collect data in a uniform way.  

So, just being aware that it may take more time to participate is important. And along those lines, asking if the clinical trial will reimburse you for some of that time. So, for example, if you need to park in the expensive hospital parking more frequently, some trials will actually reimburse you for that. Or they may offer a hotel reimbursement if you need to travel from far away and spend a night there. So, don’t be afraid to ask those things because many times that’s built into the clinical trial.

So, that’s an important thing just practically to know. So, asking for a study calendar so you get a sense of how frequently you’ll need to be going to the doctor is really important. Also, then realizing that potentially you may have to go to see the doctor or the care team more frequently initially, but then after the first couple of months, if everything is going well, you’ll likely have the flexibility to go less often. So, all those questions are important to have in mind.  

Hesitant to Participate in a CLL Clinical Trial? What You Should Know.

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Hesitant to Participate in a CLL Clinical Trial? What You Should Know. from Patient Empowerment Network on Vimeo.

What should patients know about clinical trials? CLL expert Dr. Michael Choi explains patient trial opportunities and provides key questions to ask about clinical trial participation.

Dr. Michael Choi is a hematologist and medical oncologist at UC San Diego Moores Cancer Center. Learn more about Dr. Choi. 

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Transcript:

Laura Beth:

Dr. Choi, what would you say to someone who is perhaps a little hesitant to participate in a trial to encourage them to learn more?  

Dr. Choi:

Yeah, certainly, it’s very natural to be anxious and to be hesitant about entering into a clinical trial about volunteering to receive something that maybe hasn’t been fully tested before. You know, I think when I talk to my patients about trials, one thing I try to keep in mind is that ultimately, to a degree, to a large degree, we have our trials for our patients. We want to have our trials open at our center so that patients that can benefit from them can have access to them.  

And so, a lot of trials are really kind of designed in that way, to give patients a chance at something that we think will be better or a chance to get a drug when other drugs have stopped working. So, I think many clinical trials aren’t really with the thought that we want to prioritize the science and that our patients are just guinea pigs.  

In fact, I think all of us that are treating patients with CLL and being a part of CLL clinical trials, I think we’re really doing our best to prioritize our patients and their health. The trials are really just a part of that. But beyond that, I think maybe the questions that can be asked would be kind of what’s known already about these drugs. 

 Many trials are using drugs that we’ve already used for many years and maybe just using them in a different manner. So, talk to your doctors about what’s already known. Certainly, the question about how will they be monitored, that’s an important question for your team too. And then, certainly, make sure you understand if there are any other options that would be appropriate or good for you and discuss the pros and cons of the trial versus those options. 

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

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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.

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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.  

What Questions Should Patients Ask About Joining a Clinical Trial?

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What Questions Should Patients Ask About Joining a Clinical Trial? from Patient Empowerment Network on Vimeo.

Before participating in a clinical trial, what questions should you ask? Dr. Pauline Funchain of Cleveland Clinic shares critical questions patients should ask their healthcare team when considering a clinical trial.

Dr. Pauline Funchain is a medical oncologist at the Cleveland Clinic. Dr. Funchain serves as Director of the Melanoma Oncology Program, co-Director of the Comprehensive Melanoma Program, and is also Director of the Genomics Program at the Taussig Cancer Institute of the Cleveland Clinic. Learn more about Dr. Funchain, here.

Katherine Banwell:

If a trial is recommended, what questions should a patient ask about the trial itself? 

Dr. Pauline Funchain:

Yeah. I mean, I think when it comes to that, I think that the important things to ask, really, are what are the drugs involved, and what your doc thinks about those drugs. 

I think, what is the alternative? So, again, we were talking about option A, B, and C. Is this option A of A, B, and C, or option C of A, B, and C? Are there ones like Cindi mentioned, where if you don’t do it at this point, you’re going to lose the opportunity, because you started on something else. Because a lot of trials require either that a person has never gone through therapy, and so this is sort of first line trial. But some trials are you have to be at the second thing that you’ve been on.  

So, these are the things that matter to know. Are you going to lose an opportunity if you didn’t do it now, or can you do it later, and what is the preference? And I think, practically speaking, a patient really wants to know what is the schedule? Can I handle this? How far away do I live from the place that is giving this trial? 

What are the locations available? Because if there’s a trial and you have to come in every two weeks, or come in four times in two weeks, and then once every month after that, that makes a big difference depending on where you live, what season it is, weather, that kind of stuff.  

And I think the question that you don’t really have to ask, but a lot of people ask, is about cost. So, medical care nowadays is complex, it costs money when you don’t expect it to, it doesn’t cost money when it’s – you just don’t know what will and what won’t. Financial toxicity is something that we really care about. Every center is really trying its best, but it’s hard to do in this type of environment. So, people then get concerned that clinical trials might be even more complex.  

I think clinical trials are much less complex in that way, because a lot more of it is covered by the sponsor, whatever that sponsor is, whether that sponsor is the National Institutes of Health, as a grant, or a pharmaceutical company.  

But, in general, a clinical trial really should cost the same or less than whatever the standard medical care is; that’s the way they’re built. So, many, many people ask us that question, but I think that is the question that probably is less important than what are the drugs, what does your doc think about this, are you going to lose an opportunity if there’s a different sequence, and does this fit into your life and your schedule, and people who can give you rides.  

Katherine Banwell:

Yeah, right.  Are there resources available to assist with the financial impact of a clinical trial? 

Dr. Pauline Funchain:

There are not specific resources for clinical trials; there are specific resources for patients in general, though. There are things like helping with utility bills sometimes, sometimes with rides, I think a lot of clinical trials do pay for things like parking. In general, many trials themselves have extra financial support in them. There was a trial I remember that paid for airfare and lodging, because there were only five centers in the country, and so we had people fly in, and the whole thing was covered. 

It depends on the trial. But in terms of outside of trials, there are always patient advocacy groups and things like that, where certain things can get covered. But often, the types of things that get covered by those groups are the same things that get covered with normal medical care.