By: Martha Carlson
Martha lives in Illinois and was diagnosed with metastatic breast cancer in January 2015. She has a husband and three children, ranging in age from 12 to 18, a dog and a lizard.
My family will tell you that after years of refusing a cell phone, I was persuaded to buy one – and carry it – when I was diagnosed with metastatic breast cancer. It did make sense since I could use it while waiting for appointments, while sitting in the chemo chair, to call someone if I couldn’t drive home, and much more.
What I didn’t expect was for it to become a lifeline to other people in similar situations. I also didn’t expect it to become a conduit to possible future treatments, but that is what it has become as I follow the treatment choices of others with HER2+ breast cancer.
I also try out cancer-related apps for my phone, where two have remined steady parts of my life. One, from Share Cancer Support called My MBC & Me, helps me keep track of articles and questions for my doctors. The other was created by the Metastatic Breast Cancer Alliance and is called MBC Connect (on desktops at mbcconnect.org or as an app for iPhones under the same name).
MBC Connect serves researchers and doctors by providing de-identified data about the people who’ve registered, and it also directly serves patients with its Insights section. But for me, the exciting part of this app is brand new: clinical trial search capabilities that are truly patient-focused.
Like many people with metastatic cancer, I’ve searched for clinical trials that may suit my current situation. It is not easy to use the larger search engines (such as clinicaltrials.gov) because if you forget or don’t know the correct words to use, then a perfect trial may be omitted from your results. With MBC Connect, you fill out a treatment survey (and more surveys if you like), click on the Clinical Trials icon, select Match Now, and wait a few minutes for your matches. On the matches page, you can filter in what you’re looking for to narrow down the results further, including by the phase of trial, location, BRCA presence, and more.
Though I’m not looking for a change in my treatment right now, I am always looking for non-treatment quality of life studies for people with metastatic cancer, and I can find those on this app’s trial search function too. I’m also glad about the fact that the app/site will update my search automatically and alert me when something is new without me having to remember to check.
But, to be honest, my favorite part of this updated version is what happens when I push the “Additional Trials” button on the Clinical Trials page. This takes you to the metastatic breast cancer page of trials that will soon show up in your searches. For someone with metastatic disease, it is both fascinating to see current research interests, and reassuring to know that for many of us there is more than the currently available lines of treatment. You can even go outside of the breast cancer listings to see Phase I and I/II “umbrella” trials for brain metastases, targeted therapies, immunotherapies, etc, which are updated for the trial search by advocate Christine Hodgdon of thestormriders.org.
Technological advances can sometimes feel like patients’ actual needs are way at the bottom in importance. The products may be about us, but they are not for us. So when I find an app or a magazine or a suggestion that makes my life with metastatic breast cancer easier, I am all for it. Now I can save a trial, email it to my doctor, delete the ones that don’t fit, and make myself a more active and knowledgeable part of my own healthcare.
Barbara Jacoby is an award winning blogger that has contributed her writings to multiple online publications that have touched readers worldwide.