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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

Related Resources:

A Patient Shares Her Clinical Trial Experience

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

Are Clinical Trials a Logistical Nightmare?


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. 

Music as Medicine: The Healing Power of Music

The late neurologist, Oliver Sacks in his book “Musicophilia: Tales of Music and the Brain,” argued that music is essential to being human in ways that we’ve only begun to understand. Music stimulates the brain centers that register reward and pleasure, which is why listening to a favorite song can make you happy.  There is in fact no single musical center in the brain, but rather multiple brain networks that analyze music when it plays, thereby giving music the power to influence everything from our mood to memory.

For cancer patients, music can be a powerful therapeutic tool in coping with a cancer diagnosis and treatment.   “Music was so important to me, “says breast density and cancer patient advocate, Siobhan Feeney (@BreastDense), “because my concentration was so poor I really struggled with reading books and watching movies through chemo.  I walked a lot and plugged into lots of beautiful music along the way.”

The Evidence Base for Music Therapy

Music therapy (the clinical use of music as a tool to help achieve treatment goals) is an evidence-based practice that harnesses the power of music to improve quality of life in people dealing with illness.  References to music therapy in the clinical setting dates back to a series of letters, published in The Lancet, in 1891, which discussed the approach of a group of musicians providing live music to patients in London hospitals. [1] From that point, music therapy established itself as a recognized health profession in the clinical context.

Research findings have supported a wide range of music therapy benefits from changing brain waves to lowering heart rate and blood pressure.  While clinical trials, to date, have been small, the results are promising.   Music therapy has been shown to boost the effects of anti-nausea medications in patients receiving chemotherapy and reduce pain perception.

In a study of patients who underwent surgery for lung cancer, the patients who received music therapy before and after surgery, reported less pain and had lower blood pressure, heart rate and anxiety. In addition, the dose and frequency of pain medication given after the surgery was reduced in the group who received music therapy. [2]

In 2013, a small Turkish study of 40 people found that using music therapy and guided visual imagery greatly reduced anxiety levels for patients undergoing chemotherapy.[3] The patients also had less frequent and less severe nausea and vomiting. Similarly, a study, conducted in 2017, found that music therapy could help reduce anxiety in patients having radiotherapy simulation. [4]

The benefits of music therapy are not confined to the clinical setting.  You can tap into your own self-directed music therapy session anytime by simply listening to some favorite songs or pieces of music. If you’re looking for some inspiration, check out the following suggestions crowdsourced online.

Although I’ve categorized these music choices according to genre, take a tip from breast cancer survivor and classically trained professional harpist, Amy Camie, who challenged herself to listen consciously to her sons’ heavy metal music. In doing so, Amy discovered music “can be a profound step in the exploration of self, in the conscious act of honest reflection that goes by many names–mindfulness, meditation, self-discovery, self-empowerment, and enlightenment.” [5]

Music Playlist

Choirs

Both Blanca (@BlancaUsoz), who is caring for someone with cancer, and John (@walls2) choose a piece of music sung by their favorite choirs.  For Blanca, listening to Leioa Kantika – Nel Blu Dipinto Di Blu (D. Modugno), sung by the choir of her hometown, lifts her mood.   “Music has played a pivotal role in helping me live with a terminal diagnosis,” says John. “I’ve been privileged to have gotten to know the amazing @mountsionchoir, who sang “Don’t Give Up” by @andygrammer for me at #ChoirsForCancer. It’s now my anthem.”

Classical

Jennifer (@vitalfrequencies) opts for a classical piece from Beethoven; his opera Fidelio, or his 5th,  6th and 9th Symphonies being particular favorites.

Indie Pop

Sally (@sally_crowe) finds Christine and The Queens’ song “Tilted” to be uplifting.

Rock

While Chris (@christheeagle1), who says he “fell back in love with his music collection through cancer”, chooses “Under The Bridge” by Red Hot Chilli Peppers, Ronny (@RonnyAllan1) suggests Oasis, “Don’t Look Back In Anger”.

Both Eva (@EvaAlloza) and Teresa (@tbaupuig) recommend listening to Spanish rock band  Jarabe de Palo. Lead singer, Pau Dones, recently died from colon cancer, but his songs, say Eva, “are full of vital energy.”

Wrapping Up

Music is a universal language. It can open the doors to empathy and understanding. In the words of Camie,”In a world full of separation, anger, prejudice, fear, judgment, and pain, perhaps by expanding our familiar musical tastes we could slowly develop a listening ear for others who may not fit into our comfortable genres. Perhaps listening to music that expresses life experiences from different perspectives will naturally nurture more tolerance and empathy for our brothers and sisters around the globe.”


References

[1] Boyde C, Linden U, Boehm K, Ostermann T. The Use of Music Therapy During the Treatment of Cancer Patients: A Collection of Evidence. Glob Adv Health Med. 2012;1(5):24-29.

[2] Wang Y, Tang H, Guo Q, et al. Effects of Intravenous Patient-Controlled Sufentanil Analgesia and Music Therapy on Pain and Hemodynamics After Surgery for Lung Cancer: A Randomized Parallel Study. J Altern Complement Med. 2015;21(11):667-672.

[3] Karagozoglu S, Tekyasar F, Yilmaz FA. Effects of music therapy and guided visual imagery on chemotherapy-induced anxiety and nausea-vomiting. J Clin Nurs. 2013;22(1-2):39-50.

[4] Rossetti A, Chadha M, Torres BN, et al. The Impact of Music Therapy on Anxiety in Cancer Patients Undergoing Simulation for Radiation Therapy. Int J Radiat Oncol Biol Phys. 2017;99(1):103-110.

[5] https://upliftconnect.com/building-tolerance-and-empathy-through-music/

The Restorative Power of Music

Music has always been a universal language with the power to heal, restore and challenge an individual. The history of music dates back to the beginning of civilization and music therapy came along a few thousand years later. Music therapy first became popular in the late 1940s, a few years after World War 2 and the beginning of what we now call “The Hippie Movement”. It has been proven to help patients self-sooth, reduce muscle tension, decrease anxiety while increasing self-awareness and self-confidence, increasing verbalization and the patient’s overall view of themselves and their future. In today’s world, there are many stories of how music has helped patients through their recovery period who suffered from a mental or physical illness.

Music Therapy and Mental Illness

One in five adults in the US suffer from mental illness in a given year, which is approximately 43.8 million Americans. Despite such a large percentage of Americans who suffer from mental illness there hasn’t been much progress in effectively treating the root cause instead of only the symptoms. Music therapy bridges the gap between medication and alternative therapy. The Nordoff-Robins approach to music therapy focuses on helping patients with autism, mental disorder, and emotional disturbances to increase their interaction with others while decreasing harmful tendencies and triggers.

Follow the Music

A recent study in 2017 discussed the methods in which music therapy helped to improve the emotional and rational tendencies of people with schizophrenia. The study went on to discuss the benefits of music therapy for other mental disorders like depression and anxiety.  There is now a close correlation to an improvement in social and emotional skills to the various types of music therapy available for treatment. Mental Illness advocates and patients alike have supported the growth and progress of some of the largest music concerts all over the world. These moments of music appreciation has established a greater understanding of the healing power of music.

The Results

Music Therapy works due to the release of dopamine in the brain causing you to feel a sense of reward thus increasing your mood and desire to engage with others. A randomized controlled study in 2008 on Music Therapy for Depression indicated the potential for music therapy to lower symptoms of depression while improving overall mood. Further studies in 2016 supported this claim and extended it to anxiety disorders and some personality disorders as well. Results show that patients who have been exposed to several sessions of music therapy showed a significant improvement with coping skills and their overall self-image.

Beyond the Study

Music therapy has long proven its ability to reduce the symptoms of certain mental illnesses like depression, schizophrenia, personality disorders and many more. Future studies hope to acquire more diverse data samples and cross-analysis them with studies on introducing music to children in negative environments. These studies hope to prove and expand the understanding of how music is able to alleviate certain symptoms in the brain.

HealthTunes and MusicMedicine

Imagine a world where music is prescribed as medicine – HealthTunes calls this MusicMedicine – and your music prescription is just a click away.

HealthTunes is the only publicly available online streaming audio service created to improve your physical and mental health by pairing credible medical research with active music links.

Walter Werzowa (a musician, composer, sound inventor, and music producer) founded HealthTunes after learning his son was diagnosed with a rare medical condition. After visiting numerous physicians who recommended surgical treatment, Walter and his wife, Evelyne, decided to have their son listen to music inlaid with binaural beats and isochronic tones. Physicians saw a drastic improvement in his condition and began requesting more information from Walter and Evelyne on how they accomplished such a feat.

Subsequently, Walter decided to share his knowledge of the healing power of music and created the API for HealthTunes in the hopes of assisting others who suffer from complex medical conditions.

HealthTunes’ MusicMedicine regulates the autonomic nervous system and accelerates endogenous processes. Binaural beats, which are the result of two slightly different frequencies, create a third signal in the brain. Coupled with music, binaural beats restore and balance a patient’s physiology.

The goal is to allow everyone access to credible medical research explaining the benefits of the music they listen to. Thus, HealthTunes provides all users access to medical research from knowledgeable institutions as well as music therapy all in one place.

To use HealthTunes, simply go to the website, sign up, and music therapy is at your fingertips. Therapies can be listened to anytime, anywhere internet access is available and no credit card information is necessary. All therapies were created by music composers with medical research in mind to treat specific ailments.

Chemotherapy is very important in fighting cancer but can have unpleasant side effects. HealthTunes music has been shown to relieve chemotherapy symptoms in patients both during and after undergoing treatment.

Therapy for anxiety, depression, stress, as well as numerous other ailments is offered on the HealthTunes site. Chronic pain patients recorded 30 percent less pain perception after undergoing music therapy.

Walter strives to lessen the cost of medical care; therefore, the service is free to all patients. Donations, however, are accepted and greatly appreciated.

UCLA Medical Center Nephrology Department and UCLA Center for East-West Medicine endorse HealthTunes.

HealthTunes’ wish is to help you conquer obstacles you’re faced with while providing you with music therapy you can truly benefit from.