Tag Archive for: cancer research

March 2023 Notable News

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March highlights the daily discoveries that are having a big impact on cancer treatment. Scientists have discovered ecDNA, a genetic material outside of chromosomes, that may lead to a new way to treat cancer. A geriatrician has developed an assessment tool to help doctors to choose more individualized cancer treatments. A new urine cancer test makes it easier for everyone to have access to cancer screening, even outside of the doctor’s office. Each day presents new opportunities for fighting the war on cancer.

Breakthrough ecDNA Discovery Could Revolutionize Cancer Research

A multi-disciplinary team of researchers has pinpointed the major role played by extrachromosomal DNA in the evolution of carcinogenic diseases. This kind of “external” oncogenes make cancer drug-resistance, and it could become one of the main targets for new and effective treatments in the future reports Tech Spot. This ecDNA is a piece of genetic material found outside of chromosomes in human cells. Genetic material outside of cells can be a sign of cancer. Researchers have found ecDNA’s role is to cause the cancer to spread rapidly, create tumors that are drug resistant, and can cause a relapse of the cancer. Oncogenes can hide in ecDNA for a period of time before becoming active again. Scientists are now using this knowledge to look at fighting cancer in a different way. Click to read the full story.

A Different Approach to Treating Cancer

Age is by far the biggest risk factor for getting cancer and it is the main factor in determining treatment options. Older patients are not all the same when it comes to activity and general health. There are patients in their 80’s that are healthier than some patients in their 60’s. Geriatrician Wiliam Dale’s team created a multi-dimensional assessment tool that looks at each patient’s physical and functional health reports WINK NEWS. The parameters of this tool look at patient nutrition, sleep, and mental health; focusing on the individual needs of the patient. The results of this new assessment have made for better outcomes for cancer patients. They experienced less chemotherapy toxicity, less nausea, and had better blood counts. The findings also showed that patients with hearing loss were at more risk for complications due to not hearing physician instructions clearly. Click to read the full story.

New Cancer Screening Urine Test has 99 Percent Accuracy Rate

Researchers from the Surface & Nano Materials Division of the Korea Institute of Materials Science recently developed a strip-type urine sensor capable of amplifying the light signal of metabolites in urine to diagnose cancer reports MITech News. The urine test needs no other analysis, making it simple to use outside of the hospital or doctor’s office. Cancer cells release metabolites, using a light scattering technique on the test strip, cancer can be detected using a small amount of urine. This test can detect cancer in various stages with 99% accuracy. It is a less invasive screening test, and the results can be used to get the patient to the doctor for further testing. Early screening for cancer allows for earlier treatment, making better patient outcomes. Click to read the full story.

February 2023 Notable News

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February shines a light on the importance of human experience as well as science in the fight against cancer. Patient navigators, people sharing experience and knowledge with cancer patients, have an important impact on their outcome. In studying the process of the cellular genome, scientists have discovered a vulnerability that can help treat cancer. Scientists are also studying cancerous tumors to use the body’s immune system to destroy the cancer. The more discoveries scientists make about how cancer survives; the more cancer treatments are developed to fight it.

Cancer Treatment is a Minefield of Bills, Meds, and Jargon. Patient Navigators Can Help People of Color Find a Path to Better Care

“Patient navigation,” is individualized assistance designed to help patients, often from disadvantaged populations, overcome barriers in the health care system reports Sahan Journal. Patient navigators are used for patients with organ transplants, HIV, infertility issues, as well as cancer. The navigators have training in the medical field and often personal experience with their area of expertise. The job of the patient navigator is to help the patient get access to screening tests, treatments, follow up care, and financial assistance. They can also explain about clinical trials and make sure the patient understands everything involved with their care. Using this specialty to assist patients has been shown to increase survival rates for cancer patients, especially those in marginalized communities. The navigator can help bridge the cultural differences between the patient and the physician. The patient feels less alone and overwhelmed with a navigator to help them through a difficult time. Click to read the full story.

Newly Identified Pathway Could Boost the Power of Cancer Drugs

Damage to cellular genomes is what results in cancer. It is known that radiation and toxic molecules, such as cancer drugs, can damage this cancer-causing DNA. Scientists have discovered that genomes are more vulnerable during the replication phase. A new signaling pathway used by cells to protect their DNA during replication has been uncovered by researchers at Washington School of Medicine reports SciTechDaily. If scientists can block this pathway, it can also inhibit the cancer cells from being protected from the stress of the replicating phase. The finding of this pathway can help cancer drugs become more effective. Researchers found eight protein factors in the genome protection pathway and are developing inhibitors to block those proteins. This is an exciting advance to opening another pathway to treating cancer. Click to read the full story.

Harnessing the Immune System to Fight Cancer

Antibodies are proteins in the blood created to recognize specific molecules, called antigens, that are unique to a pathogen or other threat to the body. Part of Oni’s research focuses on understanding how antibodies may be used to disarm cancer cells reports MedicalXpress. Immune cells make signals so they are not destroyed by macrophages, which are white blood cells that kill microorganisms. Cancer cells make these signals to evade macrophages as well. Scientists are studying the structure of the tumor, particularly the proteins on the tumor surface, to understand why cancer isn’t destroyed by the immune system. One such surface protein is glycosyltransferase, found on the surface of pancreatic cancer tumors. If this protein is removed from the surface of the tumor, the tumor is destroyed. Scientists can target proteins on the surface of cancerous tumors, increasing immune response to destroy the cancer. With these findings, drugs are being developed to cause macrophages to destroy cancer cells. Click to read the full story.

December 2022 Notable News

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Research is a valuable tool in every aspect of cancer; prevention education, treatment advances, and effectiveness of new treatments. New research has shown that survivors of childhood cancer have a significant increase in risk for cardiovascular issues. Oral chemotherapy is a new modality for cancer treatment and research shows the pros and cons of this treatment. This month, research confirms that there is a direct link between alcohol consumption and increased risk in getting certain cancers. All these studies will help to educate cancer patients, causing better outcomes for people.

Survivors of Childhood Cancer Face a Higher Risk of Cardiovascular Disease

The researchers said the risk of cardiovascular disease was significantly higher in cancer survivors in virtually all categories, including sex, race/ethnicity, income, education, smoking status, and physical activities reports healthline.com . The increased risk of cardiovascular disease for survivors of childhood cancer comes from the use of chemotherapy and radiation to treat the cancer at an early age. The class of chemotherapy commonly used is anthracyclines and it is known to place patients at risk for damaging the heart muscle. Radiation therapy directly to the chest causes damage to the heart muscle and the heart valves. The research did show an increase in risk to children that were treated for cancer in households making under $50,000. To reduce the risk of cardiovascular disease for these patients, they should follow a healthy diet, maintain a healthy weight, and do not smoke. Oncologists need to refer childhood cancer patients to cardiologists for screening to find cardiovascular disease in its early stages. Catching the disease in its early stages allows for prompt treatment and better outcomes. Click to read the full story.

Oral Chemotherapy: What are the Advantages?

Chemotherapy kills or slows the growth of cancer cells. In some cases, it can eliminate cancer. In others, it prolongs life by slowing down the progression of the disease reports MedicalNewsToday.com . Oral chemotherapy can come in the form of a pill or liquid that can be swallowed or placed under the tongue. This treatment can be given at home which is less expensive and less inconvenient for cancer patients. The dosing of oral chemotherapy is especially important and requires clear instructions from the doctor. The medication requires special handling such as wearing gloves and storing it at a specific temperature. It needs to be kept secure and dry in an airtight container away from food, children, and pets. The side effects of oral chemotherapy are the same as IV chemotherapy; hair loss, fatigue, nausea, and bruising. It is important to log side effects and notify the doctor of vomiting. There are several disadvantages to taking chemotherapy orally. If a patient has an adverse reaction to the medication, they are at home instead of with a medical professional and will take longer to get help. This medication given orally is very dose dependent and patients can make errors at home that affect the treatment outcome. There is also a high out of pocket expense in using oral chemotherapy versus IV, some insurance companies will not cover the cost of oral chemotherapy. Oral chemotherapy is not available to treat all forms of cancer but in some cases, it has been proven to be more effective than IV chemotherapy. Click to read the full story.

Alcohol and Cancer Risk: Most Americans Aren’t Aware

The new study, published in the journal Cancer Epidemiology, Biomarkers & Prevention, notes that there are seven cancer types that have been linked to alcohol consumption reports Healthline.com . The types of cancers linked to alcohol consumption are mouth and throat, larynx, esophagus, colon and rectum, liver, and breast cancer. Alcohol consumption is one of the leading modifiable risk factors for people to prevent cancer. Since the pandemic, consumption of alcohol is on the rise. There needs to be interventions made to help educate people on the direct link to cancer such as media ads, warning labels, and doctor’s educating their patients. Older Americans are less aware of the increased risk of cancer form drinking alcohol. There is no safe level of drinking of any kind of alcohol and this needs to be emphasized to help prevent cancer. Click here to read the full story.

Should Prostate Cancer Patients Consider a Treatment in Clinical Trials?

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Should Prostate Cancer Patients Consider a Treatment in Clinical Trials? from Patient Empowerment Network on Vimeo.

Prostate cancer expert Dr. Andrew Armstrong explains how prostate cancer clinical trials work and discusses why patients should feel confident exploring this option at any stage of their cancer journey.

Dr. Andrew J. Armstrong is a medical oncologist and director of clinical research at the Duke Cancer Institute’s Center for Prostate and Urologic Cancers. For more information on Dr. Armstrong here.

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Key Questions for Prostate Cancer Patients to Ask Before Joining a Clinical Trial

Transcript:

Katherine Banwell:

At what point should a prostate cancer patient consider participating in a clinical trial? 

Dr. Armstrong:

Sure. If you look at the National Comprehensive Cancer Network, NCCN guidelines, you’ll see that clinical trials should be discussed along all parts of the journey. 

And that’s because clinical trials often can change how we think about cancer, how we treat cancer, can improve cure rates, can improve survival. Most of our drugs and treatments that have been successful in all cancer have been the result of clinical trials. 

And it’s not always appropriate, though. We have very many treatments that can cure patients, and we don’t want to interfere with that, but sometimes a clinical trial can layer on top of that cure rate. 

But many patients, their cancer becomes resistant to proven therapies. That’s certainly an area where clinical trials can make a big difference, either to put off chemotherapy or more toxic therapies, or in patients who have exhausted proven therapies. That’s certainly appropriate. 

But sometimes clinical trials do not involve placebos. They involve combination therapies, they involve layering on top several approaches to try to improve the survival on top of standard of care.  

And so as a director of a research program, we have all sorts of trials. They come in Phase I, Phase II, Phase III. Really only the Phase IIIs involve placebo controlled or controlled trials. Phase II tend to be early studies, where everybody gets a therapy and it’s preliminary to determine efficacy. Phase I is really trying to determine the safety and dosing of an experimental drug. But patients can benefit across the spectrum. 

So, it’s important, particularly if you have advanced disease, to go to a site, like a comprehensive cancer center, for a second opinion to see if there is alternatives to what you might get in the community.  

Katherine Banwell:

Yes. What would you say to someone who might be hesitant to participate in a trial? 

Dr. Armstrong:

Participation in a trial involves shared decision-making, just like being diagnosed, embarking on initial treatment, even embarking on standard of care treatment. Everything is shared decision-making in terms of risks and benefits.  

Sometimes a trial is not in a patient’s best interest, and it’s important for a physician to be upright about that and up front about the risks of a trial. 

I think when patients have exhausted proven therapies, it’s quite appropriate to talk about therapies that might be in the research pipeline that are showing some promise, that have demonstrated at least success in the laboratory or in small numbers of patients coming before.  

For example, in 2022, a brand-new drug just got approved called Pluvicto, or PSMA lutetium. This is a new smart bomb for prostate cancer. Just last year it was a research drug, but this year it’s successful and being used in the clinic. All those hormone drugs I mentioned earlier, those were research drugs five years ago. So, we don’t make advanced, we don’t extend lives without participating in research. We’re not happy with the way things are, we want them to be better. 

And the only way to make them better is by studying them. And not all of these trials are successful, unfortunately, but many are, and that’s why we are seeing men live longer and have better survivorship nowadays. 

How Has Cancer Research Evolved in Light of the COVID-19 Pandemic?

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How Has Cancer Research Evolved in Light of the COVID-19 Pandemic? from Patient Empowerment Network on Vimeo. 

What have been some benefits for cancer research during the COVID-19 pandemic? Expert. Dr. Shaji Kumar describes some of the clinical trial changes that have been born from the pandemic to improve access to care and to decrease the risk of infection for cancer patients.

See More From the Best Care No Matter Where You Live Program

Related Programs:

Transcript:

Mary Leer:

Are there any noticeable trends born out of the pandemic that will be or could be a benefit to the future of cancer care or research?

Dr. Shaji Kumar:

That’s a very important question, and I think we always learn from adversity, and I think this is going to be no different. I think, especially when the pandemic hit back in the spring of last year, we all had to think fast on our feet to figure out how best to continue to tell about the best care for the cancer patients without compromising the care in any way. And we knew that bringing the patients back into the clinic at the same rate we did before the pandemic would expose them to significant risk for infection, so how do we continue with treatment? There have been very different things people have tried…one of them is to try and get the medications to patients at home. If they are on IV medications, they can be changed to something that’s comparable that can be given by mouth. We already did that for some patients. For some patients who used to come to the clinic very often, so we figure out is there a way for them to get some of those testing done in a clinic much closer to home, so they can avoid the travel, they can avoid being in a bigger city, they can avoid being in a bigger institution, again, reducing the risk of exposure, and then you look at those numbers and then decide on the next course of treatment. We converted many of the clinic visits to video visits. Nothing is as good as having the patient right in front of you, but this is the best we could do under the circumstances.

And I think that helped. So I think the clinical trials was a big problem because in many of those trials were done in a very rigid fashion with very little variability allowed within the protocols. And everybody loosened from the clinical trial sponsors, the pharmaceutical companies, the institutional review board, the investigators to try and build flexibility into those clinical trial structures to allow patients to continue to be on those trials, So what does that mean for the future? I think the video visits are here to stay, I think we will continue to utilize that and bring patients back to the clinic only when it’s absolutely needed. I think the clinical trials will have in-built flexibility so that patients can enroll on clinical trials remotely, they can potentially be given some of those medications at home, maybe it would be something where we would check into the patients on a regular basis to make sure things are proceeding in the right way. I think there are increasingly technologies that will allow the patients to communicate in real time with the care team and also provide many of the data that we need through iPads or iPhones, Apple watches, whatever we end up using.

So that is that I think that technology will rapidly take off in the next few years. So I think a lot of the care of the patients with cancer in general, and particularly cancer patients, is going to look very different five years from now, because of all these things that we have always thought of and we thought, “Yeah it will take time to implement, it’s difficult.” Now we figure it out in a year. We can do a lot of those things.

Jeff Bushnell:

What’s the final takeaway for the average cancer patient and caregiver, how to get through this? What’s your bottom line for us all?

Dr. Shaji Kumar:

Your cancer treatment comes first, let’s not compromise on it, let us do it as safe as we can by observing all the instructions in terms of social distancing, masking, avoiding gatherings, getting vaccinated, and make sure you keep connected with your care team. You don’t have to be in the clinic to do that. There’s a variety of different tools, I think every hospital has options to either through their medical records to message their care team, or set up video visits and so forth.

So we want to be in a state where it was before the pandemic in terms of your communications, but use the technology, so we can decrease the risk of exposure without compromising the quality of care.

Notable News: December 2019

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While 2019 is nearing its end, there are all kinds of new beginnings in cancer research. Scientists are finding new and exciting discoveries that could lead to fine-tuned cancer treatments specific to each person, each type of cancer, and each response the body has to treatment. Using tropical flowers, mitochondria, and an off switch for cells, researchers keep finding new paths to treatment for even the most difficult and deadly cancers. Of course, that doesn’t mean we need to forget about prevention; there continues to be new information about how our lifestyles could affect our cancer risk, right down to our hair color.

A trip to the hair salon might mean an increased cancer risk, reports ecowatch.com. A study by the National Institutes of Health shows that permanent hair dyes and chemical hair straighteners might put women at an increased risk for cancer. The study found that women who used permanent hair color were nine percent more likely to get breast cancer. Black women, though less likely to use hair dye, had the most notable risk. They showed a 45 percent higher risk of developing breast cancer. Women who used hair straighteners had an 18 percent higher risk of breast cancer. Frequency of use posed a problem, too. Hair products can contain more than 5,000 chemicals, including formaldehyde, which is a known carcinogen. This study’s findings aren’t enough to draw a definitive link between the hair products and breast cancer, and no warnings have been issued about using hair products, but the findings do indicate that more research needs to be done to determine whether or not there is a connection. Read more about this study here.

Wouldn’t it be great if you could just switch off a cell to prevent tumors from growing and spreading? It might be possible, reports medicalxpress.com. Researchers have discovered what could be a new cancer immunotherapy treatment for patients who haven’t responded to other types of immunotherapy. The study, done on mice, shows that many tumors display the molecule MR1, which keeps the body from fighting the cancer cells. Researchers found that when they gave the mice an antibody that blocked the MR1 cell, cancer fighting cells could come in to slow cancer growth and prevent it from spreading. With this new information, doctors would be able to screen patients to see if they have the MR1 cell, and determine if they would respond to the potential new immunotherapy. Researchers now want to apply what they’ve learned to human tumors. You can learn more about the findings here.

Another treatment-related discovery is that there might be an alarm at the molecular level that serves as an alert when cancers have become resistant to treatment, reports sciencedaily.com. Mitochondria, which are present in most cells, can sense DNA stress which can indicate when cancer cells have developed resistance to chemotherapy, researchers found. The findings could lead to new cancer treatments that would prevent chemotherapy resistance, making it more effective. See the details about this discovery here.

Also from sciencedaily.com, we’ve learned that a tropical flower might hold the answer to treating pancreatic cancer. The plant, Uvaria Grandiflora, grows in Malaysia, Indonesia, Thailand, and the Philippines, and its flower contains a chemical that researchers have used as a model to create three new molecules which they hope could treat pancreatic cancer. All three of the molecules have shown that they kill pancreatic cancer cells in a Petri dish, and while the potential drug trials are more than five years away, these molecules could become new drugs for treating pancreatic cancer that would be more effective and less toxic than current treatments. You can find more information here.

As you say goodbye to 2019, we hope you will continue to say hello to Patient Empowerment Network. We will continue to provide you the latest in cancer research news as we continue in our mission to empower patients, family members, and caregivers in innovative ways. We’re particularly proud of our digital sherpa™ program, which you can learn more about at voice.ons.org. Learn how the sherpas are used to enhance the experience of patients and nurses as told by Regina White, RN, MS, OCN at Moffitt Cancer Center in Tampa, Florida. Check it out here.

Happy, Healthy, New Year to all!

Spotlight On: National Cancer Research Month

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Cancer research. It has taught us about risk factors, environmental factors, health screenings, causes, treatment options, metastasis, recurrence, rates of survival, and even how healthy cells might be used to wipe out the cancerous cells. Cancer research is broad and reaches far beyond the study of the infected cells. The research helps us to understand cancer and the many aspects of it that will affect the estimated 1,735,350 people who will be diagnosed with cancer in 2018, not to mention the millions already living with the disease. The years upon years of research devoted to cancer has led to valuable insight and life-saving measures. To emphasize the importance of the contributions of cancer research, the month of May was established as National Cancer Research Month and is led by the American Association for Cancer Research (AACR). More information about National Cancer research month can be found here and here.

When it comes to cancer, the areas of research are vast. Many people may not know that there is more to cancer research than looking for treatments or a cure. To understand cancer, researchers spend years discovering how the disease forms, what environmental factors play a role, and what treatments might stop it. The types of research range from basic cancer research that studies the actual cancer cells to survivorship research that studies how cancer affects people after treatment. Database and population-based research are also critical to learning more about cancer. At cancer.ca the Canadian Cancer Society gives a thorough description of the various kinds of cancer research and the value they have which can be found here.

Once considered a hopeless disease, cancer plagued civilizations dating as far back as ancient Egypt, which you can read about here and here. However, it was in the early 1900s that worldwide cancer research began to offer a more clear understanding of the disease. Groups, like the AACR formed in 1910 and the Canadian Cancer Society formed in the 1930s, brought doctors and scientists together with the mission to search for ways to eradicate the disease and help improve the quality of life for those living with cancer. It was 1971 when President Nixon declared a war on cancer. The disease had become the second leading cause of death by 1970 and Nixon’s signing of the National Cancer Act of 1971 aimed to amplify the national efforts against cancer. The act established the National Cancer Institute (NCI) in its current form. Formerly created by the National Cancer Act of 1937 as the federal government’s agency for cancer research, the NCI was strengthened in 1971 with broader authority given to the director and more emphasis placed on research that included public and private partnerships, funding for additional cancer research facilities, and the creation of an international research data base. Today, the NCI is made up of about 3,500 people and 30 divisions, offices and centers all working to advance cancer research. The NCI, which calls itself the leader in the nation’s cancer research, reports that in the last few decades there have been declines in rates of new cancer and overall cancer deaths and that the number of cancer survivors in the United States more than doubled between 1992 and 2016 from 7 million to more than 15 million and the number is expected to rise to more than 26 million by 2040. More information about the NCI and it’s history can be found here and here and here.

For those affected by cancer, the research can be critical and today it is more accessible than ever. Research groups and advocacy organizations are available to patients and caregivers all day, every day through the internet. Data can be found, reviewed and discussed all from the comfort of your own home, favorite coffee shop, or wherever you have access to wifi thanks to programs such as the Patient Empowerment Network (PEN) Empowered Patient Chats , Patient Cafe , and Facebook groups. Not only are the patient resources increasing in number, they are increasing in value. “Online communities may be virtual, but they are no less real in terms of support and influence,” writes Marie Ennis-O’Connor in her September 2017 post for PEN’s Patients Helping Patients Blog. Ennis-O’Connor’s post, 12 Keys to Finding, Growing, and Nurturing Your Online Community, emphasizes the value of online communities to cancer patients when it comes to research, support, or any number of topics critical to ensure that patients stay informed, supported, and empowered.

How Can Cancer Patients Contribute to Science?

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Interview with D. Ross Camidge, MD, PhD, Director, Thoracic Oncology Clinical and Clinical Research Programs; Professor of Medicine, Division of Medical Oncology University of Colorado Denver

During the recent Lung Cancer Town Meeting in Chicago, Illinois, Janet Freeman-Daily interviewed Dr. D. Ross Camidge about how lung cancer patients can contribute to cancer research. Dr. Camidge says there are several ways that are each equally important. Watch the full video below to find out.

 

How Can Cancer Patients Contribute to Science? from Patient Empowerment Network on Vimeo.

Knocking Down Barriers to Accrual Using Social Media

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Social Media uses powerful tools that can be used to dispel myths about clinical trials and to engage patients.

(Editor’s Note: Cindy Chmielewski, a myeloma patient, member of the PEN Advisory Board, and longtime patient advocate and teacher, presented a poster exhibit at the recent 2015 AACR conference on the use of social media for clinical trial accrual. Below is the poster description and an image of the poster)

Multiple Myeloma is an INCURABLE cancer of plasma cells. Many researchers feel that a cure can be found in the near future if clinical trials which test their hypotheses are properly designed, fully enrolled and completed in a timely fashion. As a myeloma patient it is frustrating to hear that less than 5 % percent of adult cancer patients participate in clinical trials and that 24.4% of cancer clinical trials close early because they fail to complete enrollment. As an independent patient advocate I have made it my mission to use Social Media to knock down barriers to trial accrual.  Social Media provides powerful tools such as online patient communities, Twitter, podcasts, Facebook, patient blogs, and YouTube that can be used to dispel myths about clinical trials, excite the population about the successes of recent research and educate potential participants and physicians about clinical trial options.  According to the Center for Information and Study on Clinical Research Participation (CISCRP) an overwhelming majority of people (77%), say that they would consider getting involved in an appropriate clinical research study if asked. Since many doctors aren’t asking patients to participate in clinical trials patients need to be educated and empowered to question their doctors about ALL their treatment options, including trial participation. Social Media has helped me evolve from a passive by-stander in my medical care to an engaged partner and it is my mission to use it to help fellow patients.

Social Media and Clinical Trial Accrual

Questions Patients Have About Clinical Trials

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Interview of Dr. Philip Thompson, Assistant Professor, Leukemia Department, MD Anderson Cancer Center

Dr. Philip Thompson, MD, Assistant Professor, Leukemia Department, Anderson Cancer Center is an oncologist and a researcher who runs many of the clinical trials at MD Anderson. Dr. Thompson is interviewed by CLL patient, Carol Preston about some of the many questions patients have concerning clinical trials.

Dr. Thompson discusses informed consent and the lengthy paperwork involved. He explains that the informed consent document usually covers legal requirements of all stakeholders in the trial and is therefore often difficult for patients to understand. At MD Anderson, there are nurses and other healthcare personnel who can help a patient through this process.

Dr. Thompson advises patients to ask questions of their medical team. An important question to ask at the outset is  what are the benefits and risks of the trial versus the benefits and risks of the standard treatment of care.

Logistics is also an obstacle for many patients. Early phase studies require a great deal of office visits and testing which, in turn, means a great deal of travel to and from the hospital. If the patient lives far away, this could be a hardship. Again, patients need to ask questions and make decisions about what is the best option for them.

Cost is an issue for many patients. Trials require more testing that their insurance may not cover. As a guiding principle, there are 2 types of tests in a trial: those that are considered specific to the study (these are covered by the trial sponsor) and those that are considered standard of care (these are billed to insurance). But there are gray areas. For instance, the study may mandate a CT scan every month and the insurance company may not consider that to be standard of care and not want to pay. Again, patients have to ask questions and demand answers to those questions so that they can make the best decision for them.

Bottom line is: Ask, Ask, Ask!!! Ask questions of your medical team and if you don’t understand the answer, Ask Again!

Questions Patients Have About Clinical Trials from Patient Empowerment Network on Vimeo.

An Oncologist’s Perspective on Clinical Trials

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(Editor’s note: This article is in 2 parts. This is Part 1 (go here to read Part 2) and consists of an interview of Dr. Anita Wolfer, Senior Oncologist and Head of Unit in Oncological Research, Lausanne University Hospital (CHUV). The interview was conducted by the “Indomitable” Christine Bienvenu, breast cancer patient, avid patient advocate and board member of the Patient Empowerment Foundation, our sister organization under development in Europe. And please, don’t be concerned that this is an interview with a European oncologist. You will be surprised to see that the issues, thoughts, concerns of patients and doctors are the same. These issues are worldwide!)

Great progress has been made today in immunotherapy and targeted therapies – especially in cancer research – thanks to patients having access to clinical trials. It is crucial that patients learn about their options.

Interview With Dr. Anita Wolfer

The Indomitable Christine Bienvenu

The Indomitable Christine Bienvenu

Christine Bienvenu (CB): How do clinicians learn about clinical trials?

Dr. Anita Wolfer (AW): It depends very much on where they’re working: Doctors in university hospitals are constantly informed of clinical trials. Their peers outside the hospital environment are not, though: It’s up to them to actively find clinical trials and stay informed.

 

CB: Here in Switzerland, are there formal protocols in place for spreading information about clinical trials?

AW: In terms of the medical system, there aren’t any formal protocols on doctors being up to date on clinical trial options. I think it’s important that university doctors take it upon themselves to keep their non-university environment peers informed. Often, unfortunately, those oncologists working outside the hospital environment only think of clinical trials when conventional treatments have failed. For researchers like us, it’s more second nature to turn to them for treatment options.

Here in Switzerland, the “Réseau Romand d’Oncologie” (Western Switzerland’s oncology network) centralizes all the information about clinical trials, and keeps it updated. For the new Swiss Cancer Center Lausanne (SCCL) opening in 2017, its director, Prof. Coukos’ vision is simple: All information – clinical trials, research, collaboration, and participatory medicine – should be accessible to patients and professionals alike.

 

CB: When and why do clinicians talk about clinical trials to their patients, and how do you view the patient’s role in trials?

AW: Often today, oncologists will only talk to a patient about clinical trials if they see that there’s a direct benefit to the patient. But in my view, it’s important to inform the patient of the clinical trial, regardless so that they too can look into the application process. In an ideal world – and I say this as an oncologist and clinical researcher – there would be a clinical trial for every patient who walks through our doors.

As for the patient’s role, I’m a firm believer that sharing is building in this profession. Patients are crucial in this process: No-one knows their bodies better than they do. The way I see it, any patient of mine gives me the opportunity to learn. I don’t want to waste that.

 

CB: What obstacles do clinicians face in conveying clinical trial information to their patients?

AW: Unfortunately, some oncologists are afraid that university doctors might “steal” their patients, so they don’t readily refer them for fear of losing income for their own hospital. With patients being so closely followed during the clinical trials as well, this is comforting: Often, they’d rather not go back to their ‘regular’ oncologist. In my view, it’s a shame to look at it that way: If there’s a relationship of confidence and trust with their primary oncologist, if patients know they will get all the necessary information, they’ll be more inclined to stay with their respective ‘regular’ oncologists. To be brutally honest, my feeling is if an oncologist is upset about a patient seeking a second opinion, then maybe it’s time to find a new oncologist? It happens in the medical profession: I’m not immune to it – no-one is. But it shouldn’t be an issue… Just like in any relationship, if the doctor/patient relationship isn’t working out for the patient, he or she has every right to move on.

 

CB: In your profession, how important is mindset – in both the patient and the doctor or clinician?

As in any profession, or with any patient or co-worker, there are always those who are willing and excited to go the extra mile. If the mindset to do so isn’t there, there really isn’t much that either a patient or an oncologist can do in terms of moving forward. A pro-active mindset is crucial.

 

CB: In the same vein, how important is mindset in clinical trials, then?

AW: Being convinced about the clinical trial is also very important – not only for the patient, but for the doctor. A well-informed doctor means a well-informed patient. Speaking for myself, I’m constantly on the lookout for the best treatment options for my patients – even if it’s a clinical trial outside the CHUV. Why wouldn’t I? It’s about moving forward in cancer research, not about being territorial with knowledge.

 

CB: What role, for you, does the sharing of information and access to clinical trials play in patient mindsets?

AW: Armed with information, most patients are willing to be a part of trials – even if it isn’t one they had specifically hoped for. Time and again, we’ve seen how patients who participate in clinical trials usually have better outcomes than patients who don’t. Beyond the obvious rigorous monitoring, the crucial element here is that the patients feel more responsible for, and engaged in, their care. What strikes me, time and again, is that clinical trials offer hope. And while not every clinical trial story is a positive one – with frustration and heartbreak often integral to the process – hope is a crucial element and great motivator.

 

CB: Getting into clinical trials is no small feat. What improvements, if any, would you suggest? Can patients be better-informed about clinical trials?

AW: In an ideal world, there would be a clinical trial for every patient. One of the objectives of the CHUV oncology department is to have a portfolio of trials so that there are alternatives for every patient. And despite limited resources, the department is working hard to open up a maximum of number of trials. Also, with the SCCL opening up in Lausanne, more research funding is coming in, and more specialised oncologists are coming on board.

 

CB: What for you is a key component of a successful patient/clinician or doctor relationship?

AW: Ultimately, it’s about trust, confidence and collaboration. And going back to your previous question, if patients feel they’re being fully supported by their oncologist, they’ll return to them – university hospital setting or not. To me, it’s extremely important that patients take the necessary steps to establish the relationship of trust that they seek.

 

CB: What feedback have your patients given you about their experiences in clinical trials?

AW: Some patients will say outright that they’re not interested. But the vast majority – I’d say 70-80% – are willing participants. So far, I’ve only ever had one patient tell me she wasn’t happy with a clinical trial. For most, it goes beyond participating for their own benefit, per se: it’s about being part of a greater cause and helping medical science advance. Patients are genuinely altruistic. What is clear, though, is that it’s a team effort that involves the patient and the medical community.

 

CB: Where can patients find information about clinical trials?

AW: There are a number of great resources out there. In no particular order, I can suggest the Swiss Group for Clinical Cancer Research (http://sakk.ch/en/) or Clinical Trials (https://clinicaltrials.gov/) which is a service of the US National Institutes of Health that lists all the studies being done in all 50 US States and in 190 countries.

Here in Switzerland, there are obviously the Lausanne University Hospital (CHUV: http://www.chuv.ch/) or the Geneva University Hospital (HUG: http://www.hug-ge.ch/) websites. Experience has taught me that the university websites are sometimes a bit outdated, but patients can send emails directly to oncologists there and should get an answer.

 

CB: Any parting words of wisdom?

AW: Patients never doubt themselves in asking questions. There is no such thing as a stupid question. If a patient isn’t having his or her questions answered, he or she has every right to find someone who will! Questions are crucial: They lead to greater understanding, knowledge, and progress.

Also, it’s important to remember that in Clinical Trials, limits have to be set to be able to provide realistic results. Make the criteria too broad, and it becomes difficult to show a trial’s effectiveness. With immunotherapy, clinical trials broaden patient eligibility. Granted, a patient needs to be healthy enough to be able to benefit from a trial, so if for example a patient is in palliative care, they wouldn’t be eligible – unless, of course, the clinical trial is in palliative care.

The National Cancer Institute’s (NCI) “10 step guide on how to find a cancer treatment trial” helps patients better understand what clinical trials are all about, how to talk to their doctors, and know what questions to ask, visit: http://www.cancer.gov/about-cancer/treatment/clinical-trials/search/trial-guide?cid=tw_NCIMain_nci_Clinical+Trials_sf39211784

Clinical Trials 2.0: Reinventing Research For The Social Age

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Clinical research is changing. No longer the sole preserve of clinicians and researchers, the Internet and new digital technologies are reinventing the way in which patients take part in the clinical trials process.

In the past decade there has been a revolution in how patients access health information. The Internet is increasingly the first port of call on our health-seeking journey. According to Pew Research Center’s Internet and American Life data, one in three U.S. adults have gone online to figure out a medical condition; 34% of Internet users have read someone else’s commentary or experience about health or medical issues on an online news group, website, or blog; and 18% of Internet users have gone online to find others who might have health concerns similar to theirs.

“Clinical research” is among the most-searched terms on the Internet; yet every year hundreds of trials are delayed or abandoned because they can’t recruit enough patients. Poor rates of trial recruitment are a major obstacle to the successful and efficient completion of clinical trials. Insufficient recruitment of study participants may result in losing the statistical power of a predictive conclusion, as well as prolonging the time it takes to get the trial drug to market. Oncology trials in particular are failing to meet enrollment goals, with most delays in conducting trials stemming from recruitment. 85 percent of cancer patients don’t know trials are an option. 55 percent of clinical oncology sites fail to get a single patient because they simply can’t find them and one third of trials fail to recruit a single patient1.

Given that enrollment into a clinical trial is frequently the best treatment option for patients with cancer, how might we make more patients aware of the benefits of clinical trials? Combining the power of new technologies with social networking and patient activation is our best chance at galvanizing the process of patient recruitment, and perhaps even an opportunity for us to completely reinvent the process of clinical research itself.

The world-wide web has opened a window to the world of clinical research. With the click of a mouse, we can now access information on the latest trials, download medical information to our portable devices, connect with researchers in real-time, and find other patients with the same condition. Dedicated websites such as the U.S government’s ClinicalTrials.gov site, and the World Health Organization’s International Clinical Trials Registry Platform (ICTRP), help patients easily find information on clinical trials. The launch of these sites represented a paradigm shift in clinical research; information that had once been closely guarded is now available to all. Some other note-worthy websites include The Center for Information and Study on Clinical Research Participation (CISCRP), a nonprofit organization dedicated to educating and informing the public about clinical research; and clinical trial recruitment sites, such as ClinicalConnection, TrialReach, EmergingMed and CureLauncher which exist to match eligible patients to appropriate trials. A new digital platform Cure Forward uses a patient’s uploaded genetic sequencing to connect cancer patients to clinical trials. The site, which is currently in beta, also offers cancer patients more information on the mutations and treatments available in “gene stories” specific to their genome.

Mobile applications can be downloaded from the Apple and Google Play Stores to give patients real-time access to current information about cancer clinical trials. This is opening up opportunities for better medical treatment and care, and allows those in regional and remote areas equal access to clinical trial information.  Some sites, such as the Novartis Clinical Trials website provide users with an interactive tool for finding relevant trials taking place near their location. A GPS search function allows users to see all the trials taking place in their country by location. For those looking further afield, the Novartis site features a global search function that displays clinical trials taking place in any country.

Popular social networking sites such as Twitter, Facebook, and YouTube are being used, alongside dedicated social media patient communities, to raise awareness and encourage wider participation in clinical research. The TrialX site encourages patients to send a tweet to @trialX, preceeded by “CT” describing the type of clinical trials they are seeking. Dr. Susan Love Research Foundation’s Army of Women Program (AOW) taps into the power of its social networks to mobilize research into the causes of breast cancer.

 

“The word Army, which means a large group of people united for a specific purpose, quickly and clearly describes who we are. The image of us all joining in a virtual Army to get this done is a powerful one” – Dr. Susan Love Research Foundation.

 

 

The traditional methods of advertising clinical trials through print media, brochures or poster displays, meant geographic limitations narrowed the pool of potential recruits. Using popular social networking sites, researchers can now accelerate the recruitment process by extending their social reach to take in a global pool of potential recruits. According to US hospital group, Mayo Clinic, social media is especially effective at recruiting patients for its studies into rare diseases. Social media and online networks could help researchers assemble large and demographically diverse patient groups more quickly and inexpensively than traditional outreach methods. “Patients with rare diseases tend to find one another and connect because they are searching for information and support,” says Mayo Clinic’s Marysia Tweet, M.D. “Studies of rare diseases often are underfunded, and people with these conditions are quite motivated.”

One such motivated patient is Katherine Leon, an SCAD (spontaneous coronary artery dissection) survivor, who was determined to find the cause of her disease, and prevent it from happening to others. At the time of her diagnosis, SCAD, a traumatic cardiac event that affects fewer than 200,000 Americans, was a poorly understood and under-researched condition. Physicians had no clinical studies on which to base treatment plans. Leon connected with fellow SCAD survivors through social media and used their collective voice to launch research at the Mayo Clinic. The study recruited 18 participants in less than a week, six more than could participate in the initial study of 12 patients. This rapid enrollment of participants through social networking served as proof of concept for future research studies to harness the power of highly-motivated patient communities. Leon credits social media as a key research accelerant. “Social media absolutely gets the credit for making scientific study of SCAD possible” she says. “In 2003, my cardiologist told me I would never meet another SCAD patient. It was just too rare. Today, I “know” more than 1,000 fellow survivors thanks to Inspire, Facebook ‎and Google. These patients are connected to the clinical trials immediately — at hello!”

Harnessing this dynamic combination of new digital and mobile platforms, social media, and activated patients offers an unprecedented opportunity for patients and researchers to find each other with greater speed and precision, which in turn can speed up the process of recruitment to clinical trials.

Peer-To-Peer Education

The ability to engage interactively through social media further enhances the benefits to patients. Reading information in a brochure doesn’t compare to the ability to interact and ask questions in a social networking site. What is it really like to take part in a clinical trial? Would you need to travel? Will it incur any personal expenses? What kind of side-effects might you have? Trial sponsors can respond in real-time to these questions, thus speeding up the recruitment process. In addition, patients already enrolled on the trial, can provide personal insight into what is involved. One patient, who has participated in two Phase 1 clinical trials, said that he was motivated to sign up for them, by reading others’ stories online. Hearing about the experiences of others who had participated and “come out the other side” encouraged him to take part.

Sometimes there can be an open sense of distrust about the nature of clinical trials – a fear on the part of some that they will be treated as a “guinea pig”. For patients who may be wary of research agendas (particularly when pharma-led) peer-to-peer education is a vital ingredient in building trust and confidence in clinical trials. Patient advocate, Stacey Tinianov believes “there is great value in patients and caregivers leveraging the connected platforms to educate themselves on the benefits and realities of clinical trials. Learning patient to patient is often more accessible for a variety of reasons, not the least of which is a certain trust”.

Moreover, social networking has the potential to empower patients and care-givers with a greater sense of control. All too often, patients who face serious illness can feel isolated and powerless; joining an online community can help enormously. By exchanging coping tips, offering encouragement and support, and sharing information on the latest clinical research, patients feel a greater sense of agency. Breast cancer survivor Diane Glassmeyer, took part in a Sierra-Stanford study of the effectiveness of support groups conducted via online video. The randomized clinical trial was designed to help researchers determine whether this type of video-mediated support group improves the well-being and quality of life of breast cancer patients who live in rural areas. Glassmeyer described the Skype Support Group as “an amazing experience to be able to see and talk to everyone in the group each week from all over the state”.

The role of the care-giver must not be overlooked in peer-to-peer support. Half of health information searches within the U.S. are on behalf of someone else. In the case of late stage oncology, or a paediatric trial, the caregiver’s involvement is imperative. We need to focus more on establishing communication and maintaining an on-going relationship, not just with the study participant, but with all involved in care-giving for the patient. Patient advocate, Andrea Borondy Kitts, a care-giver for her husband with lung cancer, says: “For the patient (my husband did not go on-line but I did) it was great to have technical help and sharing of latest research. I found out about Lucanix on the Inspire website and pursued it. When I needed to help my oncologist with the process of getting FDA approval for individual patient compassionate use, one of the Inspire members had the whole process documented and shared it with me”.

When Borondy Kitts’ husband was considering a clinical trial, she was able to get information from people with lung cancer about their experience, including side effects, with an experimental drug.  “When my husband had horrible side effects to his supposedly gentle chemo in Phase 3 clinical trial,  (Alimta /Pemetrexed), I found out from social media that many others had similar experiences and I also got tips on how to manage the side effects. My oncologist did not have enough patients in the trial to have observed these effects”.

 ePatient Reported Outcomes

Capturing Patient Reported Outcomes electronically (ePRO) through the web or mobile devices, offers a way to interact with trial participants, while also capturing critical data. Although patients for the most part face little or no restrictions on reporting their outcomes via social networking sites, there are some concerns about how this might affect the trial’s validity. Patients self-reporting on their trial treatment online and comparing notes with others may potentially jeopardize the trial. The exchange of personal experiences whilst enrollled in clinical trials can lead to patients (or any researchers on the same social network) to inadvertently “unblind”* themselves, leading to knowledge of treatment allocation. Concealment is crucial for unbiased reporting of results, and disclosures by one patient might unintentionally distort another patient’s awareness of their own symptoms, potentially skewing data reporting and potentially invalidating study results. The intersection of free speech, social media, and clinical research is still unchartered waters. Borondy Kitts, believes that while guidelines can be implemented to safeguard data integrity in a blinded trial, “for unblinded trials there should be very few limits on what can be shared.”

Patients Are Doing It For Themselves

The communication process which traditionally flowed from pharmaceutical companies to physicians to patients has been transformed by social media. Patients, who have traditionally relied on their doctors for information about the latest clinical research, are now realizing that information may be more readily found in their online patient communities. After she progressed following chemotherapy and radiation, Janet Freeman-Daily, a lung cancer survivor, took it upon herself to do her own research.

*A blinded study is a study done in such a way that the patients or subjects do not know (is blinded as to) what treatment they are receiving to ensure that the results are not affected by a placebo effect (the power of suggestion).

She found a molecular testing trial listed on ClinicalTrials.gov, and contacted trial sites until she found one accepting patients. The University of Colorado Cancer Center (UCCC) agreed to test her existing biopsy samples. Unfortunately, all her tests were negative.  However, she learned about more options online.  “Another patient told me I fit the profile of patients who had the ROS1 translocation,” said Freeman-Daily. “I was relatively young, had adenocarcinoma, was never a smoker, and tested negative for the three most common mutations.  He told me about the ROS1 trial, which he was in, and sent me the journal article with initial results as soon as it was published. However, my home hospital had not heard of ROS1, and did not know how to test for it.”  After she progressed following more chemo and radiation, Freeman-Daily contacted UCCC again and learned they had recently developed a test for ROS1.  This time her tissue tested positive, and she entered the ROS1 clinical trial in Denver.

Kathi Kolb describes the process of searching for a clinical trial after her diagnosis of cancer: “I searched the database of the National Cancer Institute and found a Phase 2 clinical trial to test a new medication to treat cancer-related fatigue in people with breast or prostate cancer. I had been doing a lot of research on the subject because I was suffering from horrible fatigue myself. Once I found a trial that fit and was close enough for me to get to, I followed the links provided and researched the cancer treatment center where it was taking place, as well as the clinicians in charge of the study. I was able to make initial contact with them by email. It was a really good experience overall.”

Janet Freeman-Daily, Kathi Kolb, Andrea Borondy Kitts, and Katherine Leon are part of a growing number of ePatients, empowered by the Internet and emerging new technologies, who are leveraging their online communities to drive and support the research agenda. From providing input into study design protocol, to raising awareness of the value of clinical trials and recruiting trial volunteers, patient influencers play a key role in accelerating the new research paradigm. AnneMarie Ciccarella, a patient advocate who serves on the Love Foundation Army of Women (AOW) Scientific Advisory Committee, believes patients have a valuable role to play in trial design. “The thing that interests me the most is trial design and having patients part of that process” she said. “Some grants require a patient advocate on the proposal. In some cases they are actively involved in the study design; in others, the researchers scramble to find an advocate before the submission deadline. I’ve participated as an advocate on a funded grant, possibly at the top of the list of things that mean the most to me. It’s about bringing patients and PIs [Principle Investigators] to the table when the questions are being formulated – a step ahead of actual trial design”.

The Future Is Social

 Ciccarella also serves on the advisory board of CureClick, an online platform which uses the power of crowdsourcing to share clinical trial information. As part of a group of key patient leaders, she helps recruit trial participant across all diseases. This new model of leveraging trusted patient leaders to educate their online communities about the benefits of clinical trials can do much to improve trial recruitment goals. CureClick ambassador Debbie Woodbury, explaining why she joined its advisory board, said: “I started working with CureClick early this year and serve on its advisory board because I feel that too often cancer patients find themselves in the curious situation of having too much, and too little, information. Many patients I’ve spoken to are overwhelmed with treatment decisions, and yet receive little to no information concerning clinical trials. The beauty of CureClick is the ease with which plain language information is shared peer to peer on social media, resulting in greater participation. It’s a win-win for everyone and I’m proud to be a part of it”.

The need for a faster and more globally scalable approach to trial recruitment, planning and design, is clear. To address challenges such as public awareness and understanding of clinical trials, increased competition for patients and decreased effectiveness of traditional advertising, requires new solutions. Social media are a key part of the solution. Social media offers patients greater accessibility and convenience of communication and information. For researchers, social media offers a unique opportunity for innovative trial recruitment modalities, increased efficiency and accelerated research outcomes. People are social creatures by nature; harnessing our innate desire for connection, to new information, social and technology platforms is the best chance we have to drive the next generation of research forward.

Refs

Malorye A. Can web 2.0 reboot clinical trials? Nature Biotechnology 27, 895 – 902 (2009).