Tag Archive for: cancer news

Looking back at ASCO 2024

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If you’ve been following PEN on social media, you know that we had a whirlwind of activity in Chicago 5/30-6/3. The American Society for Clinical Oncology (ASCO) annual conference, with more than 45,000 attendees, is more than anything else, a venue for significant results of clinical trials to be reported and – in many cases – celebrated.  

While the therapies being studied may be many years from approval for public use, we can still take hope from the positive results and innovative ideas presented. Here are a few of the exciting news items from ASCO24: 

  • Gene mutations took center stage, as advancements in therapies based on often difficult-to-treat mutations showed great promise. The KRAS gene mutation, in particular, often presents challenges in a variety of cancer types; results presented at ASCO24 show the potential of a continually expanding assortment of KRAS inhibitors. 
  • Cancer vaccines shared the spotlight, with multiple pharmaceutical companies collaborating to move innovation forward quickly. mRNA technology (in the news since 2020 because of the COVID vaccine) has been a subject of oncology research since the 1970s and stands poised to make possible a melanoma vaccine.  
  • Antibody drug conjugates (ADCs) continue to show promise, allowing targeted therapies with fewer side effects and better outcomes. With tremendous success in the already-approved ADCs for breast and lung cancers, studies proceed to learn the impact on other cancer types. 
  • We learned of promising clinical trials that improve on the standard of care in many specific cancer types. An example is a trial that showed using an immunotherapy drug, rather than a chemotherapy, is more effective in certain colorectal cancers than the standard of care. 
  • There is a growing research focus on prevention and understanding the increased cancer risk that factors such as obesity create. 
  • Trials on better testing and early detection yielded some great results, with a DNA blood test that can predict breast cancer recurrence garnering much interest. 
  • Over and over again, we heard the importance of patient involvement and how the patient voice is being incorporated earlier in clinical research. 

For a better understanding of the clinical trials process, read What’s Really the News You Can Use.

What’s REALLY the News You Can Use?

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“New study shows baby otters prevent diseases!” “Chocolate promotes weight loss!” Don’t we wish headlines like that were true?  Unfortunately, some of the things we read about possible new cancer treatments are just about as likely.   

Because we seek hope from these good reports, it can be easy to misinterpret what we hear about studies and results. How do you know when reading about a study’s findings whether it’s a real breakthrough or just a sensational story? 

First, let’s go over the basics of research.  

Basics of Research

  • Scientific method is how scientists figure out if some treatment makes a difference by conducting an experiment.  
  • In cancer research, the experimental process of understanding if a particular treatment is effective and safe is called a clinical trial.  
  • One study can seem to prove almost anything; it’s only through repeated, tightly monitored and designed clinical research that we can know that a treatment actually works.  An example: I ate chocolate AND I lost weight; that doesn’t mean the chocolate CAUSED the weight loss. 

Cancer Research Facts

  • There are strict regulations for designing and conducting trials and reporting results, monitored by the Food and Drug Administration (FDA). 
  • The journey from an idea to an approved treatment can take many, many years, thousands of scientists, hundreds of thousands of patients, and millions of dollars. Only a fraction of clinical trials result in an approved treatment that is available to the public.  
  • Cancer researchers start with experiments in the laboratory, often done on cells, tissues, or animals whose cells work like human cells. If the results are promising, the researcher (also known as a Principal Investigator or PI) will apply to the FDA to begin a clinical trial, sharing data and a detailed design for testing the treatment on humans.  
  • Once the application is approved, the trial begins and goes through a series of phases that are closely monitored not only by the FDA, but by the internal review board (IRB) of the institution where the trial is taking place. These phases determine if the treatment works, if it’s safe, and ultimately if it works better than what has been regarded as the “standard of care” for a specific cancer type. 
  • If the clinical trial meets the criteria stated in the initial design, it is presented to the FDA for approval. There is even more rigorous review of the research design and results, including peer review by other researchers, before the treatment is approved. 
  • Once approved for public use, the treatment is continuously scrutinized for long-term side effects and other adverse events that may indicate serious problems. Sometimes, a treatment approved for one cancer type seems promising for others, and it will go through another clinical trial. 

Here are some factors that add credibility to articles and news stories that report findings:  

  • It’s reported by a neutral (non-political or entertainment) source. Examples include the Associate Press, Nature magazine, and medical publications such as the New England Journal of Medicine of the Journal of the American Society of Clinical Oncology (ASCO). 
  • The phrase “versus standard of care” lets us know there was an experimental group that did receive the test drug and a control group that did not. 
  • Funding sources, when identified, are the National Institutes of Health, academic medical centers or research universities.  
  • The sample size is very important: the larger the study, the more significant the results and the farther along in the clinical research process it has proven valid. 
  • The entity making the report isn’t trying to see you something. 

The good news? There are AMAZING treatments currently in clinical trials that once would have seemed like science fiction. This June, our team will report “breaking news” about new cancer treatments from the ASCO annual meeting in Chicago. We are thrilled to share with you that one of OUR programs, Empowering Providers to Empower Patients (EPEP), is being published among ASCO’s online abstracts.  

Have a question about something you see online? Reach out to us at tracy@powerfulpatients.org and we will help you interpret how the information might apply to you. 

Patient Advocacy: 7 Ways To Access Medical Journal Articles For Free

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Has this ever happened to you? You come across a tweet with a link to a new study in your disease area and you eagerly click on it only to find it leads you to a journal article behind a paywall.   

I’ve lost count of the number of times this has happened to me and the frustration I feel at not being able to access a relevant study without paying an amount I cannot afford. To purchase a single article can cost upwards of $100.  

Over the years I’ve discovered there are some ways to get around this paywall.  Below I’ve outlined 7 tips on gaining access to journal articles. These methods may not always give you access to the full article, but they are certainly worth trying in your search for peer-reviewed literature to better understand your health condition. 

1. Search Google Scholar

Google Scholar provides a simple way to broadly search for journal articles, alongside books from academic publishers.  The site harvests the content of institutional repositories and links them in one record. 

2. Explore online databases

Similar to Google Scholar, there are several online repositories of academic papers free to search online. As I said above, you may not always be able to access the full article, but you will be able to read the study abstract (an abstract is a short summary of the research contained within the study.)  

Core is a search engine and index for aggregated research publications from repositories and journals globally.  

Dimensions is a next-generation linked research information system that makes it easier to find and access the most relevant information. Developed in collaboration with over 100 leading research organizations around the world, it brings together over 128 million publications. Users of the free version can use the Open Access filter to find articles. 

The Directory of Open Access Journals (DOAJ) is a list of nearly 10,000 open access journals and a search service finding peer-reviewed and scholarly journals and articles.  

PubMed, maintained by the US National Library of Medicine, is a free search engine covering the biomedical and life sciences going back as far back as 1951. 

JSTOR gives you access to more than 12 million journal articles in upwards of 75 disciplines, providing full-text searches of more than 2,000 journals, and access to more than 5,000 Open Access books. 

Web of Science covers more than 20,000 carefully selected journals, along with books, conference proceedings, and other sources.  

Science.gov covers the vast territory of United States federal science, including more than 60 databases and 2,200-plus websites.

3. Search for pre-printed publications

OSF Preprints is a platform with openly accessible preprints, or submitted manuscripts that are publically distributed before acceptance and peer-review in a traditional scientific journal. An advantage of publishing preprints is the speeding up of scientific communication and of sharing research results earlier, as it can take a long time between submission of an article till publication. OSF Preprints is developed by the Centre for Open Science (COS), a non-profit organization with the goal of greater openness and reproducible research.

4. Download an app

I have installed an app called Unpaywall as a browser extension on my laptop.  

Unpaywall is an open database of 29,624,840 free scholarly articles. The app harvests content from legal sources including repositories run by universities, governments, and scholarly societies, as well as open (free access) content hosted by publishers themselves. 

Open Access Button is another plugin for Chrome or Firefox that works similarly to Unpaywall. Click on the button while you are viewing a pay-walled journal article and it will search for open access versions.  

5. Ask a university librarian or academic

Did you know that people with access to university databases usually have “free” access to all journal articles, because their university pays for it?  If you know someone who works in a university library or is affiliated with an academic institution, it’s worth asking them if they can help you get access to a paywalled journal. 

6. Ask the author for it

While the publisher owns the article, the author will have a legal version he or she can share. Many authors are happy to share a pdf version of their published article. The author’s academic affiliation will be published alongside the article and sometimes this will include their email address. If not a simple Google search should help you find the author’s email contact.   

Metastatic breast cancer patient, Martha Carlson (@Martha__Carlson) says reaching out in this way can be productive. “I’ve had article PDFs sent to me by reaching out to the author and also through other advocates,” she explained.  

ResearchGate and Academia.edu are both platforms that facilitate making contact with researchers and requesting copies of their articles.  

Note: Do NOT share an article an author has given you anywhere online as this will breach the publisher’s copyright rules. 

7. Rent the article

Finally, some journals allow you to “rent” an article for considerably less than buying it. Ok so this tip isn’t free, but if all else fails, it may be your best option.  

I hope you find these tips helpful. As patients and patient advocates, it is important that we can access the latest evidence-based research to help us advocate for ourselves and others.  

Below you will find a list of websites linked to the sites and tools mentioned in this article. 

Useful Sites

Google Scholar:https://scholar.google.com 

Core: https://core.ac.uk 

Dimensions: https://app.dimensions.ai/discover/publication 

The Directory of Open Access Journals (DOAJ): https://doaj.org 

PubMed: https://pubmed.ncbi.nlm.nih.gov 

Web of Science: https://clarivate.com/webofsciencegroup/solutions/web-of-science 

Science.gov: https://www.science.gov 

OSF Preprints: https://osf.io/preprints 

Centre for Open Science: https://www.cos.io 

Unpaywall: http://unpaywall.org 

Open Access Button:https://openaccessbutton.org 

ResearchGate: https://www.researchgate.net 

Academia.edu: https://www.academia.edu