Nearly 2 years ago, I received an inquiry from a young lady who wanted to know if there was anything that I might know or be able to do to help her find a clinical trial that was being conducted for her particular type of breast cancer. It seemed that she had recently been diagnosed with advanced breast cancer and wanted to explore the possibility of an affiliation with some research opportunity that would help her and perhaps others as well. So, I blindly researched some of the top organizations that provide such registries, sent the list to her to discuss with her oncologist and went merrily on my way. But, shortly thereafter, she again contacted me after her doctor’s appointment with the news that her doctor’s response was that she had already looked and that there wasn’t any clinical trial being done that included this person’s type of cancer and there was nothing further that could be done. And what came flooding back to mind was the memories of a number of other patients from the past who had been dismissed by their oncologist with the words that there was nothing else that they could do followed by sending their patients out the door with no hope. So I decided to see what I might be able to do to help.
It is my hope that this new “Clinical Trials” feature will not only be of assistance to patients who are seeking help in this area but also to medical professionals who have such limited time and resources of their own when it comes to finding answers for their patients.Barbara Jacoby
Taking the information that I had found for the various organizations who carried lists of clinical trials that were being conducted by them, I started searching and it was in very short order that I discovered that I was in well over my head. I couldn’t begin to understand the guidelines that I found for each trial so I gave up on that approach and moved on to reaching out to a contact that I had at a pharmaceutical company who I had met at a seminar and outlined my situation for her. After much discussion and back and forth communications, she suggested that we might want to contact a pharma company that was the creator of a current medication that the patient was taking to see if they might be able to find a matching clinical trial for her needs and as she was taking two different medications, I researched some contacts for her at both Companies to help her.
I don’t know what the outcome was for her with regard to these connections but this matter continued to weigh heavily on my mind. And as I researched the articles for my “In the News” daily segment for my website, it was always with an extra eye on what was occurring within the clinical trials world that I might be able to share so that others would not only know about this work but also might be able to find something that would be a starting point for discussions with their own oncologists about potential clinical trials participation. And the more that I learned about how many clinical trials that were being conducted and the fact that so many of them were woefully lacking in participants, particularly in covering the spectrum of patients of diverse ages, sexes, ethnicities, etc., the more it became important to me to find a way to share what information I was finding.
Therefore, I have decided to create a new feature on my Let Life Happen website that will operate in the same way as my “In the News” segment where I will post the research that I find that is specific to this category and share it out in the same way on social media. It is my hope that this new “Clinical Trials” feature will not only be of assistance to patients who are seeking help in this area but also to medical professionals who have such limited time and resources of their own when it comes to finding answers for their patients. I also welcome articles and press releases from those companies, organizations, universities, etc. who wish to share info on my site about the clinical trials that they are beginning or participating in at any level or that have had successful outcomes so that I may share this information with a wider audience. Such submissions can be directed to me at barbara@letlifehappen.com. Hopefully, this will serve as the beginning of many more opportunities for meaningful conversations between patients and oncologists that will result in better treatment decisions for those in the world of cancer both now and in the future.
Barbara Jacoby is an award winning blogger that has contributed her writings to multiple online publications that have touched readers worldwide.