Head & Neck Cancer Care Partner Follow-Up Office Visit Planner

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Head & Neck Cancer Care Partner First Office Visit Planner

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Head & Neck Cancer Patient Follow-Up Visit Planner

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Head & Neck Cancer Patient First Office Visit Planner

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What Do Patients Need to Know About Head and Neck Cancer Research?

What Do Patients Need to Know About Head and Neck Cancer Research? from Patient Empowerment Network on Vimeo.

Is there developing research that head and neck cancer patients should know about? Dr. Jessica Geiger explains how treatment approaches are evolving and how patients can stay up-to-date on the latest advances.

Dr. Jessica Geiger is a medical oncologist at the Cleveland Clinic. Learn more about Dr. Geiger

See More From The Pro-Active Head and Neck Cancer Patient Toolkit

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How Is Head and Neck Cancer Treated

How Is Head and Neck Cancer Treated?

What Are the Types of Head and Neck Cancer

What Are the Types of Head and Neck Cancer?

Expert Advice for Newly Diagnosed Head and Neck Cancer Patients

Expert Advice for Newly Diagnosed Head and Neck Cancer Patients


Transcript:

Katherine Banwell:

Cancer research is developing rapidly. What are you excited about when it comes to head and neck cancer research? 

Dr. Jessica Geiger:

Well, I think there’s a lot of different clinical trials that are coming out in what we call the neo-adjuvant space so before you go for a surgery. Again, head and neck cancer is a little bit different when we think of other more common cancers. 

And what I mean by that is it’s one thing to be able to surgically remove cancer or to ablate it completely with radiation. The problem with the head and neck area as you can imagine, it’s such a small area. There’s a lot of precious real estate there, as I always describe to patients. And so, it’s one thing to cure the cancer, to cut it out completely. But then we have functional and sometimes cosmetic concerns after that, too. So, I think one of the biggest things that we are always trying to look to be successful in is are there therapies, are there treatments where we can shrink down the initial cancer so that the resulting surgery or the fields of radiation are not so severe? So, we’re maintaining the cure rates that we have. We’re improving on the cure rates that we have. But also thinking about how can we improve the quality of life and the function and the cosmetic outcome after their cancer treatment? And I think that’s really exciting. 

Katherine Banwell:

It is. It’s great.  And I’m sure there’s been so much development in the field, even in the last 10 years. 

Dr. Jessica Geiger:

There has. And another comment to make on that point, too, when we’re thinking about clinical trials especially. There’s really two big subsets of squamous cell cancer, head and neck squamous cell carcinoma, and that’s HPV-positive that’s related to the HPV, the human papilloma virus and HPV-negative. HPV-negative is what we think of historically as being caused by years of smoking often with heavy drinking. That’s kind of the traditional head and neck cancer patient. But over the last couple of decades now, there’s a completely different disease that we have recognized. And that’s related to HPV. And these patients tend to be light or never smokers at all. They tend to be younger, different demographic of patients. The good news is those cancers seem to respond better to cancer treatment, particularly radiation- and chemotherapy-based. 

So, as I mentioned before, trying a neo-adjuvant approach to kind of reduce the impact of surgery or the impact of radiation, particularly with HPV-related disease. We know that it’s a different disease that behaves much better than HPV-negative. So, trying clinical trials to what we call de-intensify therapy. So, maintaining the high cure rate. But reducing the toxicities related to treatment so that – you know, these are younger patients. They’re cured of their cancer. But they still require a feeding tube. Or they have a lot of chronic pain in the neck. They have a lot of morbidity with the treatment. And so, trying to reduce that down to again, maintain high cure rates, but help with quality of life in the years to come. 

Katherine Banwell:

How can patients stay up-to-date on developing research? 

Dr. Jessica Geiger:

That’s a really good question. 

Every once in a while, there are sound bites or news articles that are kind of in the mainstream press and in the mainstream news. I would just encourage patients to – if they read something or see a headline to reach out to their oncology team and have a discussion. What is this research? What does it mean for me? Does it apply to me? How is this information being used for cancer treatment? How would this impact my treatment or my follow up? It’s really hard to kind of navigate through what is, in terms of research, what is immediately clinically impactful or clinically meaningful at that time. 

Katherine Banwell:

Are there any websites that you recommend to patients? 

Dr. Jessica Geiger:

The American Head and Neck Society has a good website. And there’s a couple of other, depending on what state you live in or regions of certain states.  

There’s a lot of different support groups for head and neck cancer patients that I would encourage patients to reach out. Because especially in the regional, geographic location where you are, it may be worthwhile to be able to have those conversations. Because you can walk down the street and not know if somebody’s had it. But I’ve had more patients over the last several months, especially HPV-related disease patients who have mentioned something to me along the lines of, “I had mentioned to an acquaintance or a friend of a friend. And suddenly, I know three or four other people who have had this cancer. And I had no idea. And now we’re talking about how we have to carry a water bottle with us all the time because we can’t swallow dry foods. And how we have to be very mindful of what we’re eating when we order at a restaurant.” And so, just trying to navigate a bigger world, narrowing it down to where you live to have those meaningful contacts of other patients who have gone through what you have gone through. 

Expert Advice for Newly Diagnosed Head and Neck Cancer Patients

Expert Advice for Newly Diagnosed Head and Neck Cancer Patients from Patient Empowerment Network on Vimeo.

What steps should newly diagnosed head and neck cancer patients take following a diagnosis? Dr. Jessica Geiger shares advice to help patients play an active role in their care.

Dr. Jessica Geiger is a medical oncologist at the Cleveland Clinic. Learn more about Dr. Geiger

See More From The Pro-Active Head and Neck Cancer Patient Toolkit

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How Is Head and Neck Cancer Treated

How Is Head and Neck Cancer Treated?

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What Do Patients Need to Know About Head and Neck Cancer Research?


Transcript:

Katherine Banwell:

What three key pieces of advice would you have for a patient who’s just been diagnosed with head and neck cancer?  

Dr. Jessica Geiger:

Well, first, obviously, you have to see an oncologist you have trust and faith in. 

And whether that oncologist is a surgical oncologist which for this disease would be a head and neck cancer specialist, an ENT, or a head and neck surgeon. So, just make sure that you are comfortable with your team, because it can be a very long process in terms of treatment as well as recovery and ongoing surveillance. That’s number one. I think number two is seek out clinical trials if you have the opportunity to do that. This is a disease that’s not rare, but it’s not as common as breast cancer or colon cancer or prostate cancer. You could go to almost any general practicing medical oncology office, and they may or may not have very many head and neck cancer patients at a given time, because it’s much rarer compared to the other more common adult cancers. 

So, if you have the opportunity to seek out a clinical trial, I think that is great because we don’t have a lot of different types of therapies like you see with other cancers. 

Katherine Banwell:

Yeah. 

Dr. Jessica Geiger:

And then number three, and I can’t stress this enough, even early on in your head and neck cancer journey, again, whether it’s a very early-stage cancer or later-stage cancer. I think getting involved with the appropriate support specialties, meaning speech and language pathology, dental care, occupational therapy.  We couldn’t do what we do without some of these support specialties. And especially speech and language pathology for swallowing, it can’t be stressed enough that early intervention can be really meaningful and really impactful on function after head and neck cancer treatment.  

Katherine Banwell:

Mm-hm.  Dr. Geiger, what is your advice to patients who may feel like they’re hurting feelings by seeking a specialist or even a second opinion?  

Dr. Jessica Geiger:

So, first of all, I know it’s easier said than done, you shouldn’t worry about hurting anyone’s feelings. At the end of the day, you need to be in charge of your health. And you need to be an advocate for yourself or an advocate to your family members who may be going through this. So, I think you need to do what is best for you and what you feel most comfortable about. And if that is seeking an opinion elsewhere, I think if your provider – you’re asking for a second opinion gets their feelings hurt or is a bit offended. I would consider that to be a pretty big red flag. I have patients all the time who may ask me for a second opinion, or they want to go to a different institution for an opinion to see what else is out there. And sometimes I even offer to reach out to different contacts that I know at different other institutions if there’s something that I think may be better than what I can offer them with what we have. 

Especially when it comes to clinical trials. So, I would just try to empower the patients to – this is your life. This is your health. And you can’t worry about what us in the medical profession are going to worry about. For most of us, I would say there’s a lot of patients. We want to do what is best for each and every one of them. And if it’s not with us, then please let me help you find someone who is better for you. 

How Is Head and Neck Cancer Treated?

How Is Head and Neck Cancer Treated? from Patient Empowerment Network on Vimeo.

Once a patient is diagnosed with head and neck cancer, what are their treatment options? Dr. Jessica Geiger provides an overview of current therapies.

Dr. Jessica Geiger is a medical oncologist at the Cleveland Clinic. Learn more about Dr. Geiger

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What Do Patients Need to Know About Head and Neck Cancer Research?


Transcript:

Katherine Banwell:

How is head and neck cancer treated? 

Dr. Jessica Geiger:

The thing about head and neck cancer is even if it’s a very early-stage cancer, certainly if it’s a later stage with very big tumors that have spread, even the small cancers are often treated with many different modalities, many different medical specialties and surgical specialties. So, primarily, it’s going to be treated with head and neck surgery, sometimes with radiation, and then of course, you can require some systemic therapy which is what I do. And systemic therapy could be standard chemotherapy as you think about it. It could be targeted therapy. It could even be immunotherapy.  

Katherine Banwell:

Okay.  

Dr. Jessica Geiger:

And sometimes we have to use two or three of those different tools to get the job done. 

What Are the Types of Head and Neck Cancer?

What Are the Types of Head and Neck Cancer? from Patient Empowerment Network on Vimeo.

What is head and neck cancer? What cancers are included in this classification? Dr. Jessica Geiger provides a definition and reviews the main types of head and neck cancer.

Dr. Jessica Geiger is a medical oncologist at the Cleveland Clinic. Learn more about Dr. Geiger

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What Do Patients Need to Know About Head and Neck Cancer Research?


Transcript:

Katherine Banwell:

What is head and neck cancer? 

Dr. Jessica Geiger:

Head and neck cancer is sort of a broad term to include all cancers, all malignancies within the upper aero-digestive system. When we think about head and neck cancer, the vast majority of those cancers are going to be squamous cell carcinomas that start anywhere from the tip of the tongue to the back of the throat to the voice box area. But head and neck cancer can also include cancer of the salivary glands, skull base, or sinus cancers as well.   

Katherine Banwell:

What are the types of head and neck cancer? And where can they start in the body? 

Dr. Jessica Geiger:

There are several different types. The majority of them are called squamous cell carcinomas. Squamous cell cancers or squamous cell carcinoma encompasses over 90 percent of head and neck cancers.  

And those can start anywhere on the tip of the tongue, anywhere in the oral cavity, the tonsils, the back of the throat called the oropharynx, or also in the larynx or around the voice box in those areas. But head and neck cancer can also include salivary gland cancers of which there are dozens of different recognized histologies.  These are cancers of the larger, major salivary glands like the parotid glands or the submandibular glands. But they can also include cancers of minor salivary glands that aren’t even named but are found all over the upper aero-digestive mucosa and are there. Head and neck cancers can also include what we refer to as skull-based tumors or midline sinus, peri-sinus cancers as well.  

A Patient’s Perspective | Participating in a Clinical Trial

A Patient’s Perspective | Participating in a Clinical Trial from Patient Empowerment Network on Vimeo.

Colorectal cancer survivor Cindi Terwoord recounts her clinical trial experience and explains why she believes patients should consider trial participation.

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.

Cindi Terwoord is a colorectal cancer survivor and patient advocate. Learn more about Cindi, here.

See More from Clinical Trials 101

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Transcript:

Katherine Banwell:    

Cindi, you were diagnosed with stage IV colorectal cancer, and decided to participate in a clinic trial. Can you tell us about what it was like when you were diagnosed?

Cindi Terwoord:        

Yeah. That was in September of 2019, and I had had some problems; bloody diarrhea one evening, and then the next morning the same thing. So, I called my husband at work, I said, “Things aren’t looking right. I think I’d better go to the emergency room.”

And so, we went there, they took blood work – so I think they knew something was going on – and said, “We’re going to keep you for observation.” So, then I knew it must’ve been something bad. And so, two days later, then I had a colonoscopy, and that’s when they found the tumor, and so that was the beginning of my journey.

Katherine Banwell:    

Mm-hmm. Had you had a colonoscopy before, or was that your first one?

Cindi Terwoord:        

No, I had screenings, I would get screenings. I had heard a lot of bad things about colonoscopies, and complications and that, so I was always very leery of doing that. Shame on me. I go for my other screenings, but I didn’t like to do that one. I have those down pat now, I’m very good at those.

Katherine Banwell:    

Yeah, I’m sure you do. So, Cindi, what helped guide your decision to join a clinical trial?

Cindi Terwoord:        

Well, I have a friend – it was very interesting.

He was probably one of the first people we told, because he had all sorts of cancer, and he was, I believe, one of the first patients in the nation to take part in this trial. It’s nivolumab (Opdivo), and he’s been on it for about seven years. And he had had various cancers would crop up, but it was keeping him alive.

And so, frankly, I didn’t know I was going to have the option of a trial, but he told me run straight to Cleveland Clinic, it’s one of the best hospitals. So, I took his advice. And the first day the doctor walked in, and then all these people walked in, and I’m like, “Why do I have so many people in here?” Not just a doctor and a nurse. There was like a whole – this is interesting.

And so, then they said, “Well, we have something to offer you. And we have this immunotherapy trial, and you would be one of the first patients to try this.”

Now, when they said first patient, I’m not quite sure if they meant the first colon cancer patient, I’m not sure. But they told me the name of it, and I said, “I’m in. I’m in.” Because I knew my friend had survived all these years, and I thought, “Well, I’ve gotten the worst diagnosis I can have, what do I have to lose?” So, I said, “I’m on board, I’m on board.”

Katherine Banwell:    

Mm-hmm. Did you have any hesitations?

Cindi Terwoord:        

Nope. No, I’m an optimistic person, and what they assured me was that I could drop out at any time, which I liked that option.

Because I go, “Well, if I’m not feeling well, and it’s not working, I’ll get out.” So, I liked that part of it. I also liked, as Dr. Funchain had said, you go in for more visits. And I like being closely monitored, I felt that was very good.

I’ve always kept very good track of my health. I get my records, I get my office notes from my doctor. I’m one of those people. I probably know the results of blood tests before the doctor does because I’m looking them up. So, I felt very confident in their care. They watched me like a hawk. I kept a diary because they were asking me so many questions.

Katherine Banwell:    

Oh, good for you.

Cindi Terwoord:        

I’m a transcriptionist, so I just typed out all my notes, and I’d hand it to them.

Katherine Banwell:    

That’s a great idea.

Cindi Terwoord:        

Here’s how I’m feeling, here’s…And I was very lucky I didn’t have many side effects.

Katherine Banwell:    

In your conversations with your doctor, did you weigh the pros and cons about joining a trial? Or had you already made up your mind that yes, indeed, you were going for it?

Cindi Terwoord:        

Yeah, I already said, “I’m in, I’m in.” Like I said, it had kept my friend alive for these many years, he’s still on it, and I had no hesitation whatsoever.

I wish more people – I wanted to get out there and talk to every patient in the waiting room and say, “Do it, do it.”

I mean, you can’t start chemotherapy then get in the trial. And if I ever hear of someone that has cancer, I ask them, “Well, were you given the option to get into a trial?” Well, and then some of them had started the chemo before they even thought of that.

Katherine Banwell:    

Mm-hmm. So, how are you doing now, Cindi? How are you feeling?

Cindi Terwoord:        

Good, good, I’m doing fantastic, thank goodness, and staying healthy. I’m big into herbal supplements, always was, so I keep those up, and I’m exercising. I’m pretty much back to normal –

Katherine Banwell:

Cindi, what advice do you have for patients who may be considering participating in a trial? 

Cindi Terwoord:

Do it. Like I said, I don’t see any downside to it. You want to get better as quickly as possible, and this could help accelerate your recovery. And everything Dr. Funchain mentioned, as far as – I really never brought up any questions about whether it would be covered. 

And then somewhere along the line, one of the research people said, “Well, anything the trial research group needs done – like the blood draws – that’s not charged to your insurance.” So, that was nice, that was very encouraging, because I think everybody’s afraid your insurance is going to drop you or something.  

And then the first day I was in there for treatment, a social worker came in, and they talked to you. “Do you need financial help? We also have art therapy, music therapy,” so that was very helpful. I mean, she came in and said, “I’m a social worker,” and I’m like, “Oh, okay. I didn’t know somebody was coming in here to talk to me.” 

But that was all very helpful, and I did get free parking for a few weeks. I mean, sometimes I’d have to remind them. I’d say, “It’s costing me more to park than to get treated.” But, yeah, like I said, I’m a big advocate for it, because you hear so many positive outcomes from immunotherapy trials, and boy, I’d say if you’re a candidate, do it. 

Katherine Banwell:

Dr. Funchain, do you have any final thoughts that you’d like to leave the audience with? 

Dr. Pauline Funchain:

First, Cindi, I have to say thank you. I say thank you to every clinical trial participant, everybody who participates in the science. Because honestly, whether you give blood, or you try a new drug, I think people don’t understand how many other lives they touch when they do that.  

It’s really incredible. Coming into clinic day in and day out, we get to see – I mean, really, even within a year or two years, there are people that we’ve seen on clinical trial that we’re now treating normally, standardly, insurance is paying for it, it’s all standard of care. And those are even the people we can see, and there are so many people we can’t see in other centers all over the world, and people who will go on after us, right?  

 So, it’s an amazing – I wouldn’t even consider most of the time that it’s a personal sacrifice. There are a couple more visits and things like that, but it is an incredible gift that people do, in terms of getting trials. And then for some of those trials, people have some amazing results. 

And so, just the opportunity to have patients get an outcome that wouldn’t have existed without that trial, like Cindi, is incredible, incredible. 

What Are the Risks and Benefits of Joining a Clinical Trial?

What Are the Risks and Benefits of Joining a Clinical Trial? from Patient Empowerment Network on Vimeo.

Why should a cancer patient consider a clinical trial? Dr. Pauline Funchain of the Cleveland Clinic explains the advantages of clinical trial participation.

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.

See More from Clinical Trials 101

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Understanding Common Clinical Trial Terminology

How to Find A Clinical Trial That’s Right for You


Transcript:

Katherine Banwell:

Why would a cancer patient consider participating in a clinical trial? What are the benefits? 

Dr. Pauline Funchain:

So, I mean, the number one benefit, I think, for everyone, including the cancer patient, is really clinical trials help us help the patient, and help us help future patients, really.  

We learn more about what good practices are in the future, what better drugs there are for us, what better regimens there are for us, by doing these trials. And ideally, everyone would participate in a trial, but it’s a very personal decision, so we weigh all the risks and benefits. I think that is the main reason.  

I think a couple of other good reasons to consider a trial would be the chance to see a drug that a person might not otherwise have access to. So, a lot of the drugs in clinical trials are brand new, or the way they’re sequenced are brand new. And so, this is a chance to be able to have a body, or a cancer, see something else that wouldn’t otherwise be available.  

And I think the last thing – and this is sort of the thing we don’t talk about as much – but really, because clinical trials are designed to be as safe as possible, and because they are new procedures, there’s a lot of safety protocols that are involved with them, which means a lot of eyes are on somebody going through a clinical trial.  

Which actually to me means a little bit sort of more love and care from a lot more people. It’s not that the standard of care – there’s plenty of love and care and plenty of people, but this doubles or triples the amount of eyes on a person going through a trial. 

Katherine Banwell:

Yeah. When it comes to having a conversation with their doctor, how can a patient best weigh the risks and benefits to determine whether a trial is right for them? 

Dr. Pauline Funchain:

Right. So, I think that’s a very personal decision, and that’s something that a person with cancer would be talking to their physician about very carefully to really understand what the risks are for them, what the benefits are for them. Because for everybody, risks and benefits are totally different. So, I think it’s really important to sort of understand the general concept. It’s a new drug, we don’t always know whether it will or will not work. And there tend to be more visits, just because people are under more surveillance in a trial.  

So, sort of getting all the subtleties of what those risks and benefits are, I think, are really important. 

Katherine Banwell:

Mm-hmm. What are some key questions that patients should ask? 

Dr. Pauline Funchain:

Well, I think the first question that any patient should ask is, “Is there a trial for me?” I think that every patient needs to know is that an option. It isn’t an option for everyone. And if it is, I think it’s – everybody wants that Plan A, B, and C, right? You want to know what your Plan A, B, and C are. If one of them includes a trial, and what the order might be for the particular person, in terms of whether a trial is Plan A, B, or C. 

Participating in a Clinical Trial: What You Need to Know Resource Guide

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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.

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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.

Are Clinical Trials Safe?

Are Clinical Trials Safe?  from Patient Empowerment Network on Vimeo.

Clinical researcher Dr. Seth Pollack explains the safety protocols in place for clinical trials, including how data is reported and protected. Patient advocate Sujata Dutta goes on to share her experience in a clinical 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:

Is a Clinical Trial a Last-Resort Option?

A Patient Shares Her Clinical Trial Experience

If I Participate in a Clinical Trial, Will I Be a Guinea Pig?


Transcript:

Katherine Banwell:

Some patients feel that clinical trials aren’t safe, is that the case, Dr. Pollack?  

Dr. Seth Pollack:

No. I mean, we go through, as I was saying before, these clinical trials are extensively vetted. So, the safety is, of course, one of the things that we look most carefully about. But as I was saying before, like with any treatment’s cancer treatments have toxicity, that’s a common problem. So, and when you’re dealing with something brand new sometimes there is a little bit more risk. So, when you’re talking about these very early-stage Phase I trials you probably want to talk to your doctor about what sorts of toxicities you can expect and where they are in the Phase I trial. Are you the first ever to receive this new drug? And if you are nobody’s making you go in the clinical trial, so it can only help to get more information. Right? So, you should ask your team about it, you should find out. 

Most of the time there’s going to be a lot of patients that have been treated already, I mean, they can’t give you definitive data about how things are going but they can maybe say, “Hey. I’ve already treated a few patients on it, and they seem to be doing great.” 

Katherine Banwell:

So, you need to weigh the pros and cons of the trial. 

Dr. Seth Pollack:

You do need to weigh the pros and cons. Now, when you’re talking about these Phase IIs and Phase IIIs, I mean, these are drugs now that have really been vetted for their safety and we have a lot of data about it. And even the Phase Is, it’s not like these things are coming out of nowhere, they’ve been scrutinized, we really expect that they’re going to be safe but we’re doing the trial to prove it. So, it’s a good thing to ask about. 

Katherine Banwell:

Yeah, yeah. 

Sujata Dutta:

Yeah. I would also add that it’s so closely monitored that safety is a top priority, it’s front and center. So, the advantage, I think, with being on a trial is the close monitoring of the patient exactly for this reason. 

If something is amiss it’s going to be picked up as quickly as possible and you’re any issues are going to be addressed as soon as. So, I think, safety does get addressed pretty quickly.  

Katherine Banwell:

Good. 

Can data from trials even be trusted? Dr. Pollack, is that the case? 

Dr. Seth Pollack:

Well, of course, I mean, it can be trusted. Because the thing with the clinical trial data is that you really see the data and there’s all kinds of scrutiny making sure that the data is reported accurately. Now, there’s a whole other conversation we could have as to whether we could interpret the data differently. And sometimes that is an issue that comes up, but the data is reported very accurately. 

So, and there are statistics that are very well understood, and the bar is actually pretty high to say one arm of the trial was better than the other arm of the trial. So, if patients have better survival on one arm, if we say that, usually it means they did considerably better. Enough better that it wasn’t a random chance that one extra patient did better on the treatment arm. No. There were enough patients that did better that the statisticians can go through it with a fine-toothed comb. And they can be absolutely sure up to exactly how many percent sure they can tell you, 0.05 percent or less chance of error that this was a real difference between the study arm and the standard of care arm. 

Sujata Dutta:

I think you mentioned too that one is trust, and one is data. So, Dr. Pollack mentioned a lot about the data, I think the trust is also a very important thing. I like to go with positive intent because I do not have a reason to believe my doctor has some ulterior motive to suggest a clinical trial. And so, I trust them wholeheartedly. The first hurdle is you have to trust the system or what is being proposed to you because, as Dr. Pollack said, it’s gone through a lot of vetting. A recommendation to be part of a trial itself is vetted by your doctor when they make the recommendation. So, have faith, trust, that they are making a good recommendation. And then, of course, the data, I don’t know much about that, but as I said, I trust it. So, I would trust the data too. 

Katherine Banwell:

Of course. Of course. Some patients feel like they’re going to lose their privacy. Sujata, did you feel that at all? 

Sujata Dutta:

No. Not at all. 

I mean, with everything else that is also taken care of, my information, or whatever, is not made available to anybody. And so, obviously there’s a lot of people will get those, and I had a huge pile of paperwork to go through, but I think that’s a good thing. For my peace of mind that I knew that my information was not going to be shared outside of the study, the trial, etc., and things. So, no, I don’t think that’s a problem. 

Katherine Banwell:

Beyond these misconceptions is there anything else you hear? Dr. Pollack?  

Dr. Seth Pollack:

No. I mean, look, in our crazy modern world there’s concerns everywhere, but the clinical trial is very, very careful. Whenever possible we use the medical chart.  

And then, we have a very stringently protected database that’s storing people’s information, but it’s deidentified. So, I mean, we have a separate key to figure out who the patients are and then we try to limit the use of the patient’s name or any identifying information about them beyond that. So, and your information is not shared. For example, if there’s a drug company involved in the trial, your information is not shared with the drug company, you have a new identifier that is unique and not traceable back to you that is provided to whoever, if there’s outside groups working on the trial with you. So, your information is very carefully protected, and everyone is very conscious about issues regarding privacy.  

Katherine Banwell:

That’s great to know.  

Are Clinical Trials a Logistical Nightmare?

Are Clinical Trials a Logistical Nightmare?  from Patient Empowerment Network on Vimeo.

PEN board member and myeloma survivor Sujata Dutta shares how her family managed the logistics of her clinical trial participation.

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:

Is a Clinical Trial a Last-Resort Option?

Are Clinical Trials Safe?


Transcript:

Katherine Banwell:    

The logistics will be a nightmare and I don’t live close to a research hospital. Sujata, did you have that issue?

Sujata Dutta:  

Yeah. That’s a very interesting one, and actually I’ll share my experience. I did have this concern about logistics, because I got my transplant at Mayo Rochester, which is a two-hour drive from where I live. And so, when I got to know about it literally me and my husband were like, “Oh, my gosh. What are we going to do?” It’s not just me, my husband is my caregiver, he has to take the day off to drive me to Mayo, wait through my treatment, and drive me back. Then we have boys who were distance learning at the time, and so what do we do with them? Do we drop off a friends or take a favor from a friend? And so on and so forth.

So, the logistics was an issue and we literally said, “Thanks but no thanks” and we walked out of the room. And we came downstairs, and my husband was like, “What the heck?” My team understands everything, and I fortunately work for a very good employer, and they understand everything, people first. And so, he was like, “I can figure this out. Let’s do it if this is what’s going to help you, then let’s just figure this out.” And at that time, it was so good, and I have total respect for Dr. Pollack.

You and everybody in this medical community. My doctor who leads the trial at Mayo, she actually said, “Why don’t you check with your local cancer center? Maybe they are also approved by FDA, and they may be able to administer this treatment to you.” Unfortunately, at that time they weren’t but we were like, “We’re going to go ahead with the trial. It doesn’t matter.” My husband was like, “I’ll take the day off, you don’t worry about it.” And then, four months later my institute did get approved by FDA, and so I was able to transfer from Mayo to my local cancer center, Abramson Cancer Center, which is 20 minutes from home. And so, there are options, I know that it can be an issue and it can be overwhelming at the time which was the case with me. But I was able to overcome that, so maybe there are options available that the patients can consider.

Is It Expensive to Participate in a Clinical Trial?

Is It Expensive to Participate in a Clinical Trial?  from Patient Empowerment Network on Vimeo.

Is there a financial cost to participating in a clinical trial? Dr. Seth Pollack explains how clinical trials participation is billed and potential financial impacts.

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.

See More from Clinical Trials 101

Related Resources:

Is a Clinical Trial a Last-Resort Option?

Are Clinical Trials Safe?

Are Clinical Trials a Logistical Nightmare?


Transcript:

Katherine Banwell:    

Is this fact or fiction; it will be expensive? Dr. Pollack?

Dr. Seth Pollack:       

That’s fiction because the way the clinical trials work is we go through everything very carefully to figure out what things are standard and what things are unique to the clinical trials. So, if you are getting chemotherapy, you’re going to need blood work, you’re going to need the chemotherapy drugs, you’re going to need some sort of imaging, CT scan, or whatever your doctor would do.

And all those sorts of things are considered standard, so your insurance company is built for those. Then there’s a bunch of things that are considered research. For example, there’s special research bloodwork, maybe there’s an investigational agent that’s being added to standard chemotherapy. Those things are billed to the study, so you don’t actually have to pay anything extra, it’s just like you’re getting the normal treatment as far as you’re concerned. I mean, that’s the way it always is, and I haven’t had any of my patients ever get into real problems in terms of the finances of these things. It always works very straight forward like standard therapy.