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How Can Clinical Trials Be Accessed?

How Can Clinical Trials Be Accessed?  from Patient Empowerment Network on Vimeo.

Clinical researcher Dr. Seth Pollack and patient advocate Sujata Dutta explain the benefits of participating in a clinical trial. They review important questions to ask your doctor and share advice for finding a trial.

Dr. Seth Pollack is Medical Director of the Sarcoma Program at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University and is the Steven T. Rosen, MD, Professor of Cancer Biology and associate professor of Medicine in the Division of Hematology and Oncology at the Feinberg School of Medicine. Learn more about Dr. Pollack, here.

Sujuta Dutta is a myeloma survivor and empowered patient advocate, and serves a Patient Empowerment Network (PEN) board member. Learn more about Sujuta, here.

See More from Clinical Trials 101

Related Resources:

What Is a Clinical Trial and What Are the Phases? 

Are Clinical Trials Safe?

A Patient Shares Her Clinical Trial Experience


Transcript:

Katherine Banwell:    

Sujata, there’s clearly a lot of hesitation and misconceptions out there. What would you say to someone who’s considering a trial but is hesitant?

Sujata Dutta:  

I would say speak to your provider, speak to your doctor, and get all these myths kind of busted to say, “it’s going to be expensive” or whatever those questions are. And then, through that process also try and understand what is it that the study is trying to achieve? How is that going to be beneficial to you? So, in my instance, it wasn’t the last line of defense, it was just one of the processes or combos that would help me. And so, that was important for me to understand and then a little bit of education as well. So, I was asking, I have questions on my phone every time I meet my provider, and I did the same thing. So, I think that one of the good practices is keep your note of your questions and have those questions ready. And no question is silly, all questions are important. So, ask as many questions as you can and use that opportunity to educate yourself about it.

And maybe you realize, “No. I don’t think it’s working for me” or “I don’t think this trial is good for me.” But it’s good, important, to have that conversation with your provider, that’s what I would recommend highly.

Katherine Banwell:    

Excellent. Thank you, Dr. Pollack, if someone is interested in participating, how can they find out about what trials are even available for them?

Dr. Seth Pollack:       

Yeah. I mean, the best thing to do is to start just by asking your doctor if they know about any clinical trials. And a lot of the times the clinical trials are run at the big medical centers that may be closer to you, so you could ask your doctor if there’s any clinical trials at the big medical center even. Or I always think it’s good to get a second opinion, you could go get a second opinion at the big medical center that’s close to you and ask them what clinical trials are at your center.

And sometimes they’ll be conscious about some of the clinical trials that may be even run around the country. And you can ask about that as well.

Katherine Banwell:    

Would specialists have more information about clinical trials than say a general practitioner?

Dr. Seth Pollack:       

So, I specialize in rare cancers, so a lot of the times the general practitioners they’ve got my cell phone number, and they text me, and they say, “Hey, do you have a clinical trial going on right now?” And that happens all the time, but yeah, the specialists will usually because frankly there’s so much to know. And the general practitioners really have a lot to keep track of with all the different types of diseases that are out there. Whereas at the big centers, the specialists, part of their job is really to keep their tabs on what’s going on with the clinical trials.

So, they’re good people to ask, either your local doctor could reach out to them, or you could go get a second opinion and ask.

Sujata Dutta:  

There’s also a lot of information, Katherine, on sites such as LLS, or PEN, or American Cancer Society that they also publish a lot of information. Of course, I would recommend once you have that information then vet it by your specialist, or whatever. But if you’re interested in knowing more about clinical trials in general and some that would work for you, then those are also some places to get information from.

Katherine Banwell:    

That’s great information. Thank you, I was going to ask you about that Sujata. Well, before we end the program, Dr. Pollack, I’d like to get your final thoughts. What message do you want to leave the audience with related to clinical trial participation?

Dr. Seth Pollack:       

Yeah. I think clinical trials it can be a very rewarding thing for a lot of patients to do, I think patients really like learning about the new treatments. And I think a lot of patients really like being a part of pushing the therapies forward in addition to feeling like sometimes they’re getting a little bit of an extra layer of scrutiny, because there’s a whole extra team of research coordinators that are going through everything.

And getting access to something that isn’t available yet to the general population. So, I think there’s a whole host of advantages of going on clinical trials, but you need to figure out whether or not a clinical trial is right for you.

Katherine Banwell:    

Yeah. Sujata, what would you like to add?

Sujata Dutta:  

Absolutely, I second everything that Dr. Pollack is saying. And in my personal experience I wouldn’t say everything is hunky-dory, everything is fine. I’m going through treatment, I have chemo every four weeks, I started with chemo every week. That’s when the logistics pace was really difficult because going to Mayo every week was not easy. But anyways, as the trial progress itself every four weeks, but as I said the benefits are huge because I have labs every four weeks. I meet my provider every four weeks.

So, we go through the labs and anything amiss, I’ve had some changes to my dosage because I’ve had some changes in the labs. And so, there’s a lot of scrutiny which I like, but the flip side, for maybe some maybe like, “I have to have chemo every four weeks. Do I want to do that or not?” Or whatever. In my case, I knew it, and I signed up for it, and I’m committed to doing that for two years. And so, I’m fine with that. So, I would say all in all, I’d see more benefits of being in a clinical trial. One, you’re motivated to give back to the community. Two, you are being monitored and so your health is important to your provider just as it is to you. And so, I highly recommend being part of a trial if it works for you and if you’re eligible for one.

How Can Patients Access the Latest DLBCL Treatment Options?

How Can Patients Access the Latest DLBCL Treatment Options? from Patient Empowerment Network on Vimeo.

How can diffuse large B-cell lymphoma (DLBCL) patients learn more about developing research and new treatments? Dr. Justin Kline provides key advice to access the latest treatment options.

Dr. Justin Kline is the Director of the Lymphoma Program at the University of Chicago Medicine. Learn more about Dr. Kline, here.

See More From The Pro-Active DLBCL Patient Toolkit

Related Programs:

Which Factors Impact DLBCL Treatment Decisions?

Which Factors Impact DLBCL Treatment Decisions?

How Is Diffuse Large B-Cell Lymphoma (DLBCL) Treated?

How Is DLBCL Treatment Effectiveness Monitored?


Transcript:

Katherine:      

With all of these treatments in development, how can patients ensure that they’re receiving the latest treatment options?

Dr. Kline:       

Yeah. It’s complicated, even for somebody who’s in the business. There are so many clinical trials going on all over the place and at various stages. I think, as I mentioned early on in our conversation, one of the best ways to make sure that you or your loved one is receiving the most advanced care is to get that second opinion, particularly at a center that does clinical trials. And it doesn’t have to be an academic center. There are many offices in the community that also run clinical trials, but I think meeting with somebody who treats DLBCL for a living at least once to talk about those options is a good idea.

The second approach is really to get engaged. And it may not be the person with lymphoma, sometimes it’s a spouse or a child, usually a grown child, but doing due diligence, getting involved with websites, Lymphoma Research Foundation, Leukemia-Lymphoma Society, where you know you’re getting good information. Folks like you guys who are involved in patient education. I think I have seen many patients who come in extraordinarily well educated about DLBCL, even before their first visit, and I do think it does make a difference in helping them decide what and where they want to get their treatment.

Katherine:      

Yeah. What resources would you recommend for patients to help them stay up to date or to learn more about their disease?

Dr. Kline:       

Sure, yeah. Again, I think as folks sort of meet with their oncologist or oncology nurse, each office or center may have their own specific recommendations. I really like, as I mentioned, the Lymphoma Research Foundation, which I think is LRF.org*, the Leukemia & Lymphoma Society, LLS.org. They not only have a website that has a lot of information on it, but they often have patient education days once or twice a year where specific lymphomas are discussed in their treatment, that’s geared toward people with lymphoma and their caregivers.

They also have, it talks about dealing with chemotherapy, the financial toxicity associated with cancer treatments, how to sort of share your diagnosis with your children and other family members, so it’s not just doctors that are barking at you all day long, but it’s other people, social workers, lawyers, nutritionists, nurses. So, those are probably my two favorite organizations, but there are many others where people can get very good and useful information about DLBCL and other lymphomas as well.

How Speaking Up Can Positively Impact Your Colon Cancer Care

How Speaking Up Can Positively Impact Your Colon Cancer Care from Patient Empowerment Network on Vimeo.

Why should you advocate for the best care for you? Dr. Smitha Krishnamurthi, a colon cancer specialist from Cleveland Clinic, provides key advice to access better care, including the value of second opinions, and why you should feel empowered to speak up.

Dr. Smitha Krishnamurthi is a gastrointestinal medical oncologist at the Cleveland Clinic. Learn more about Dr. Krishnamurthi here.

See More From The Pro-Active Colon Cancer Patient Toolkit


Related Resources:

Should Your Family Members Be Screened for Colon Cancer?


Transcript:

Katherine Banwell:

What is your advice to patients who may feel like they’re hurting feelings by seeking a specialist or even a second opinion?

Dr. Krishnamurthi:

I would advise patients to not worry about that at all. I think that any one of us diagnosed with colorectal cancer would want a second opinion, would want to make sure that we’re getting an opinion from a high-volume cancer. Working here are Cleveland Clinic, I have the luxury of focusing on treatment of gastrointestinal cancers, whereas my colleagues who are in the community are treating patients with all different types of cancers. They have to be knowledgeable in all different types of cancers.

I think that’s actually much harder. I think that if your oncologist is not a specialist, the oncologist may actually appreciate having an opinion from a specialist, which helps them as well.

I think that if the doctor is going to be offended, then that’s probably not the right doctor to see. I think it’s important to just advocate for oneself and go for it.

Katherine Banwell:

That leads to my next question. What advice do you have about self-advocacy, about speaking up for yourself as a patient?

Dr. Krishnamurthi:

I think that’s very important to feel comfortable with your treatment team, with the doctor, nurse, nurse practitioner. If you have the luxury where you have choices where you live, seek out somebody who you can really connect with. I think it’s very important for the treating team to know what the patient is going through.

We have to know how the treatment is going so that we’re dosing properly, making adjustments. We want to know what our patient’s goals are so that we’re providing the best quality care.

I think it’s helpful to bring somebody to appointments. Or if you can’t bring somebody, you’ll call them on the phone. We’re doing that a lot now. People are joining by video call or even speaker phone. Many offices will have a speakerphone. You can ask to have somebody called on your behalf. Especially with COVID and the restricted visitation. Let’s get people on the phone. Somebody else to listen for you. For the patient, I mean, and to take notes. That really helps

Least Invasive First

Dr. Winn Sams

Dr. Winn Sams

Editor’s Note: This blog was written by Winn Sams, D.C. Dr. Sams practices in Columbus, NC a small town snuggled in the foothills of the western part of the state.  A native of Charlotte, NC with a B.A. in Economics from the University of North Carolina- Chapel Hill, Dr. Sams graduated from Sherman College of Chiropractic in 2002 summa cum laude and valedictorian of her class. From her own experience where personal health directives and choices were not heard nor respected, she decided to create a site where uniqueness and diversity could be anchored in healthcare. Being a healthcare provider, she knew how important it is for the “whole” person to be not only known, but included in a plan of care. Thus, Least Invasive First was born.


Recently, my youngest daughter broke her right arm and dislocated her elbow. The ER referred her out to an orthopedist nearby. We showed up at the appointment with a lot of questions and wanting to know what our options were. The doctor entered the room, did not make eye contact with me nor my daughter’s friend, who was sitting next to me. His handshake was a mere extension of his hand to us (friend and myself), kind of like a king might do to his subjects to kiss his ring. He said he would like to order a CT scan of my daughter’s elbow and do surgery. I asked were there any other options and he said “No” and that he would be back in a few minutes. He never came back, but his nurse showed up to schedule the surgery. I was furious and let her know my dissatisfaction, clearly acknowledging that it wasn’t her fault, but we would not be coming back.

Now, you have to understand I am a Doctor of Chiropractic. I see patients every day and I would never treat anyone the way we were treated. There was no informed consent , no shared decision making in developing a treatment and no respect for who my daughter was (or us for that matter) as a unique person seeking care. EVERYONE deserves all of the above! So, we left that office and made an appointment with another Orthopedist, who was absolutely fabulous. Our experience was night and day from the first one. We felt like we were a part of creating our plan of care, throughout the whole appointment and were at peace with the planned surgery, leaving there feeling like we were in good hands.

My concern is this. When we are in pain or an emergency situation, we usually are not thinking straight. We just want someone to help us get out of pain and/or tell us what is wrong. We may accept the first Doctor that we encounter, as he/she knows more than us. As far as what a Doctor is taught in school, the knowledge of how the body works and their expertise/experience, that is true. HOWEVER,  the patient still has to be included in the whole process, otherwise, you are giving your power over to someone to do as they deem fit TO you. That is a recipe for disaster.

Data and evidence based science measure outcomes that can be repeated. That is a big help when trying to choose a plan of action, but healing and how our bodies RESPOND to said procedures or medications is not an exact science. This is where our uniqueness comes in. Some people are allergic to medications or do not need to start out with the highest dose, as their bodies may actually react unfavorably to what may be the standard practice. Some people would like to try other options first, if possible. In the best interest of all, seeing how that choice works and then moving on to more invasive choices if necessary. It is imperative that your Doctor know as much about ALL of you to make the best plan of care. But, you don’t have to back down or be ashamed of your choices if they don’t match up with your provider’s. Remember, a Doctor is only a person ( yes, just a person like you and I) who has certain training and experience in particular fields. You cannot assume that your Doctor has your best care in mind, when they don’t have a clear picture of who you are on all fronts.

So, with all of this in mind, I developed a site called Least Invasive First, www.leastinvasivefirst.org, where you can keep all of your advance health directives and info in one place, with everything digitally accessible at any time. You can upload forms and/or pictures into your profile that provide information, that in especially stressful times, you have available at the click of a button. Medications can be listed with dosage, so you can edit them as they change. You can also give your username and password information to a family member, so they have access to your information if you are unresponsive or not able to make decisions for yourself. There are a lot of creative ways that this service can be used.

Fortunately, this concept works well for the Doctor and/or hospital side too. I have interviewed many of both and all have voiced a resounding affirmation that information the patient provides would be a tremendous help. I am glad to offer a way to potentially change healthcare and it starts with you!