Three ways this metastatic breast cancer patient has made research participation a part of her life.
I've been so fortunate, at just over four years since my diagnosis of metastatic cancer, to still be on my first line of treatment (minus the Taxol). When the time comes to switch treatment for whatever reason, I know I'll be taking a look at clinical trials as well as a standard second line for HER2-positive metastatic breast cancer.
So, when people ask me if I've thought about clinical trials for my care I always hesitate. Sure, I've thought about them, but when something is working well, you don't decide to just change course. I've been asked enough times about clinical trials — in part because I try to remain informed about drugs and treatments that are in the pipeline – that I have sometimes felt I haven't been doing my part to advance the care of people like me and those who will someday face metastasis. If there's anything I can do to help improve care for these future patients, while also allowing me to be confident in my own treatment, I am there. For example:
Metastatic Breast Cancer Project This research project, part of Count Me In, is stewarded by Emerson Collective, the Broad Institute of MIT and Harvard, the Biden Cancer Initiative and the Dana-Farber Cancer Institute. The MBC Project aims to speed discoveries in the understanding of metastatic breast cancer and, through that, change the futures of women and men diagnosed with this disease. The data MBC Project collects and analyzes is available to other scientists, patients, and clinicians through a link on their website. Since it's genomic research and not a clinical trial, MBC Project data doesn't dictate treatment choices but the hope is that what is learned by large amounts of patient data can speed advances that will have real-world ramifications.
Participating is easy. If you have metastatic breast cancer, go to mbcproject.org to learn about the project, complete a questionnaire, and provide permission for the researchers to collect your data and request tissue samples from your hospital. I filled out these forms some time ago, but only recently received a request for a blood sample. I agreed to this and they sent vials, directions, return mailing containers and instructions/postage. I was a little nervous about asking my usual blood-draw lab to draw this extra blood and package up the vials as directed, but it was super easy and raised no eyebrows.
HER2-Positive Heart Health This is not the name of a specific study, but I am participating in a study that hopes to determine if certain heart medications can prevent heart damage that can occur with Herceptin (trastuzumab). Although I haven't had to postpone treatment because of heart damage, I do know several women who have had to do just that. I have done so well (knock on wood) on Herceptin that my oncologist recommended me for this study with these words: “You're going to be on Herceptin for a long time, so this is important.”
Once I got past the shock of her promising statement ("A long time? You really think so?!), I realized that by adding a drug to my care that might improve the length of treatment for someone else, I might also be protecting myself. Who knows though — since I don't know yet if I am taking the actual drug or am in the control arm.
Metastatic Breast Cancer & Exercise/Diet Although exercise and diet modifications are increasingly talked about in the world of cancer care, those of us with metastatic cancer are often left out. Can we exercise? What exercise is best? Is strength training safe? Does it have an effect? I started participating in a study hoping to answer this type of question almost six months ago. I have made lifestyle changes — for example, adding resistance training and eating more vegetables – and am looking forward to finding out what the researchers have learned from all the participants.
Because I'd seen repeated questions on social media about whether or not exercise was safe, in general, for people with metastasis, I had been watching for studies that sought to answer that question. Most exercise/diet/lifestyle studies exclude stage 4 patients, so when I learned about this one through a friend I immediately reached out to the researchers. Another way to find this type of study is to use clinicaltrials.gov to search your type of cancer and whatever topic interests you (for instance, exercise). The search results could lead you to something of interest that is actively recruiting in your area.
Who knows what studies I might need in the future, but until then I thank all the people who have gone before me whose hope for the future means we all have better care today.